The Host

Julie Rovner
KFF Health News

@jrovner

Read Julie's stories.

Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

After nearly a month of bickering, House Republicans finally elected a new speaker: Louisiana Republican Rep. Mike Johnson, a relative unknown to many. And while Johnson has a long history of opposition to abortion and LGBTQ+ rights, his positions on other health issues are still a bit of a question mark.

Meanwhile, a new study found that in the year following the overturn of Roe v. Wade, the number of abortions actually rose, particularly in states adjacent to those that now have bans or severe restrictions.

This week’s panelists are Julie Rovner of KFF Health News, Rachel Cohrs of Stat, and Alice Miranda Ollstein of Politico.

Panelists

Rachel Cohrs
Stat News

@rachelcohrs

Read Rachel's stories

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories

Among the takeaways from this week’s episode:

• New House Speaker Mike Johnson (R-La.) doesn’t have much of a legislative record, but in a previous life he worked for the Christian conservative law firm Alliance Defending Freedom. ADF has been on the winning side of several major Supreme Court cases on social issues in the past decade, including the case that overturned Roe v. Wade.
• In Colorado this week, a federal judge ruled that the state cannot enforce a new law banning medication abortion “reversals,” an unproven treatment that most medical associations don’t recognize, because it could violate the religious rights of those who do advocate it.
• A new demonstration Medicaid program in Georgia to require low-income adults who want Medicaid coverage to prove they work a certain number of hours per week is off to a slow start, enrolling in its first three months only about 1,300 of the estimated 100,000 people who could be eligible.
• The National Institutes of Health may soon get a Senate-confirmed director for the first time in more than a year and a half. The Senate Health, Education, Labor and Pensions Committee, after a several-months delay, voted on a bipartisan basis to elevate National Cancer Institute chief Monica Bertagnolli to the top post at NIH. Notably, among the votes against her on the panel came from the committee chair, Sen. Bernie Sanders (I-Vt.), who has been trying to leverage the nomination to win more drug pricing concessions from the Biden administration. Bertagnolli is still expected to win full Senate approval.
• Finally, in the first installment of a new podcast feature, “This Week in Medical Misinformation,” KFF Health News’ Liz Szabo writes about how Suzanne Somers, a popular TV actress from the late 1970s through the 1990s, used her fame to push questionable medical treatments, becoming an “influencer” long before there was such a thing.

Also this week, Rovner interviews Michael Cannon, director of health policy studies for the Cato Institute, a libertarian think tank, about his new book, “Recovery: A Guide to Reforming the U.S. Health Sector.”

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:

Julie Rovner: The Washington Post’s “The Pandemic Has Faded in This Michigan County. The Mistrust Never Ended,” by Greg Jaffe and Patrick Marley.

Alice Miranda Ollstein: Politico’s “Dozens of States Sue Meta Over Addictive Features Harming Kids,” by Rebecca Kern, Josh Sisco, and Alfred Ng.

Rachel Cohrs: The New York Times’ “Ozempic and Wegovy Don’t Cost What You Think They Do,” by Gina Kolata.

Also mentioned in this week’s episode:

KFF Health News’ “Suzanne Somers’ Legacy Tainted by Celebrity Medical Misinformation,” by Liz Szabo.

click to open the transcript

Transcript: The New Speaker’s (Limited) Record on Health

KFF Health News’ ‘What the Health?’Episode Title: The New Speaker’s (Limited) Record on HealthEpisode Number: 320Published: Oct. 26, 2023

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Oct. 26, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this, so here we go.

We are joined today via video conference by Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Good morning.

Rovner: And Rachel Cohrs of Stat News.

Rachel Cohrs: Hi, everybody.

Rovner: Later in this episode, we’ll have my interview with Michael Cannon, noted libertarian health expert, about his new book called “Recovery: A Guide to Reforming the U.S. Health Sector.” But first, before we get onto this week’s news, a small correction from last week’s podcast. In talking about just how confusing open enrollment for Medicare is, I misstated the open enrollment dates. It runs this year from Oct. 15 to Dec. 7, not to Dec. 15. See, I said it was confusing.

All right, now to the news. Hey, we got a speaker of the House again! Mike Johnson is in his fourth term from the 4th District of Louisiana. He’s not strictly a backbencher; he was in the lower levels of House leadership. But I think it’s fair to say that a lot of people, including me, had no idea who he was until this week, other than that he was involved kind of heavily in trying to overturn the 2020 presidential election. And also, as far as I can tell, he’s not been active in health policy in Congress other than opposing abortion. What have you found out about Mike Johnson? Alice, you wrote about him, right?

Ollstein: Yeah, so I wrote about his anti-abortion record, and that’s just one facet. There has been a lot of good pieces this week on his opposition to gay rights and, on a lot of levels, trans rights, etc. But I focused on his anti-abortion record because that’s my beat. And so, yes, I think it’s worth noting that he used to work for the Alliance Defending Freedom, which is the conservative legal powerhouse that was behind the case that overturned Roe v. Wade, and is now spearheading the case trying to restrict abortion pills nationwide. They’re a part of a lot of other anti-abortion legal battles, as well. And, since coming to Congress, he has co-sponsored a lot of anti-abortion legislation, including bans at 15 weeks and six weeks, and none of those have gone anywhere, but that record has anti-abortion groups stating high hopes for his speakership.

But as we know, with such a narrow majority, House Republicans have been hesitant to really take big votes in anti-abortion space this year. And so, it will be interesting to watch how he navigates that.

Rovner: So, Rachel, we know he’s not on any of the major health committees. Has he done or said anything about any other parts of health care other than his Christian conservative lane?

Cohrs: Well, I think he actually has, and he has a more clear, I think, stance on health care reform more generally than a lot of the other candidates we saw because he did lead the Republican Study Committee. I think his term started in 2019, so he actually did sign on to a health care plan.

Rovner: How rare for a Republican.

Cohrs: Yeah, really. We don’t see many of those that are really spelled out. And there’s a whole white paper, it’s still on the internet, but I think it includes some policies that aren’t terribly surprising. It includes scaling back subsidies for ACA [Affordable Care Act] plans, empowering HSAs [health savings accounts], converting Medicaid funding into block grants for states, and also removing some of the ACA’s preexisting condition protections, and creating high-risk pools in states. So, it is substantive ideas about coverage and costs.

Rovner: It’s also Republican health care orthodoxy that goes back like 25 years, at this point.

Cohrs: Exactly, so nothing crazy, but we do have at least sort of a marker of where he’s at a couple of years ago. But again, I think there’s no reason to believe that he would pursue any of that anytime soon. He has a very full plate with a lot of other things.

Rovner: That’s what I was going to say, which is that Nancy Pelosi came to the speakership as one of the most liberal members of the House. That is certainly not the way she ran the speakership because, basically, her job was to find the votes for things and she had to please both the left wing of her party and the right wing of her party, and that’s hard enough for Democrats. It seems to be even harder these days for Republicans. So, no matter what his personal goals are, I guess we’re about to find out if he can actually bring together this unbelievably fractious Republican caucus.

Ollstein: And I just want to note, too, that it’s not just about the struggle to find the votes, which we saw in the very speakership debacle itself, but also, he has spoken about the need to protect their most vulnerable swing district members who are up for reelection next year. These are Republicans who are elected in districts that voted for Biden. And so those people do not want to vote on red-meat, controversial bills. We’re already hearing some issues coming up in appropriations, which is the first major hurdle he has to confront as speaker to avoid a government shutdown in just a few weeks, potentially.

And so not only is it about just getting enough votes to get bills through, but not putting these people in a position where Democrats will run a bunch of ads saying, oh, so-and-so voted for this anti-abortion thing, to try to knock them out.

Rovner: Well, while we are on the subject of abortion, there’s a lot of news there. I want to start with an update to something we talked about last week: the lawsuit in Colorado challenging the state’s new law banning medication abortion “reversals.” I put reversals in quotes. Over the weekend, a federal district court judge ruled that the law is likely unconstitutional and blocked the state from enforcing it. I imagine this is not the last we will hear about this case, right, Alice?

Ollstein: Oh, certainly. So as we discussed before, this is an issue that’s in multiple courts, potentially designed to create some sort of split that could go up to the Supreme Court and require them to weigh in. But this, in addition to the current case pending before the Supreme Court about abortion pill access, it really presents new territory, in terms of how courts could intervene in the practice of medicine.

Rovner: And as we mentioned in California, we have the opposite case going forward with the state suing a string of crisis pregnancy centers for false advertising for suggesting that they could reverse medication abortions, which, of course, is trying to give large doses of progesterone between the taking of the two medications that create a medication abortion. And it’s turned out to be that there is not a lot of scientific evidence suggesting that this is a thing. And when they tried to do a clinical trial, they had to stop it because women were having serious problems.

We also have an update from Ohio, whose November ballot measure we also talked about, and it’s right around the corner. It seems that the governor, who’s also a former senator, Mike DeWine, is going around saying that the constitutional amendment protecting abortion would allow for “partial birth abortions,” a controversial procedure that Congress actually banned in 2003 and that the Supreme Court upheld in 2007, and it’s a law that DeWine worked on when he was in the Senate. Are these scare tactics? Do we think he really believes that this is what this Ohio ballot measure would do?

Ollstein: This is among the greater arguments that are being made in Ohio around this amendment and saying it’s very similar to the arguments that anti-abortion groups and officials made in all of the states that held their own referendums last year. Basically that, should this pass, it’ll just be a complete abortion-palooza, no regulations, no nothing. And that has not panned out in those other states, and it’s especially unlikely to pan out in Ohio, given the makeup of the state legislature and Republicans controlling the state Supreme Court, all these levers of power, the governorship, etc.

And so this is not Michigan, where Democrats won control of the governorship and the Statehouse and are moving, although it remains to be seen how far they move to unwind some abortion restrictions. But that is not likely to happen in Ohio. I think these groups are parsing language in the amendment, itself, and extrapolating from that and saying, oh, this is a code word for this, and this is a code word for that, but it’s not in the text of the amendment, and because of the balance of powers in the state, it’s not likely to pan out that way,

Rovner: Although they do seem worried. Alice and I, we were both on this call the other night about all of the anti-abortion groups together trying to light a fire under their forces over this Ohio ballot measure, noting, of course, that there have been six votes since Roe was overturned in various states and that they have lost all of them. So Ohio will be a big deal in how this goes into next year.

Ollstein: Yeah, absolutely. It’ll be a big deal for Ohio. Of course, we have a six-week ban in that state that has been on hold. It has been blocked in court, but it very well could be unblocked and put back into effect if this amendment doesn’t pass. That’s the most immediate thing. So it’s a big deal for Ohio, but both sides have also made the case that it’s a big deal beyond Ohio. It really shows what kind of strategies and messaging are effective in these redder-purple states. If we can even call Ohio purple, at this point, it’s quite red.

Rovner: It is very red with one Democratic senator, basically.

Ollstein: Exactly, who is up for reelection next year. So that is going to be interesting, as well. He and other of the remaining endangered Democrats in the state are vocally supporting this, and so that should have an influence, as well, on their races.

Rovner: So we got an interesting study this week that found that abortions have actually increased in the year since Roe was overturned, although, not surprisingly, in the states where abortion was banned, where they dropped dramatically. Do we know, obviously, women are going to other states, but one would not have assumed that it would’ve gone up because we’ve talked about all the places where there were not enough slots, basically, for women wanting to terminate pregnancies and for women who were not able to travel. I was a little bit surprised by this. What did you make of it?

Ollstein: So first I want to give some big caveats. A lot of this data is guesswork. They acknowledge that a lot of the providers they reached out to for data just refused to respond, so they had to model it out based on what they were able to get. Also, this does not count any abortions that are happening outside the formal medical system. So people ordering pills from groups like Aid Access or whatnot, delivered to their home. We know that’s happening. We know that’s a very common thing, and so this doesn’t count any of that. But I think even given all these caveats, there’s some interesting things in there.

I think that what really caught my attention is not just that states like California that really moved to expand access massively, the people taking advantage of that are not just people traveling from red states. It is also reaching people who were in those blue states who struggled to access abortion even in those blue states before. And so they mentioned parts of rural California on the call announcing the data, specifically. So I found that interesting, too.

Rovner: So, well acknowledging, obviously, that more women are traveling to get abortions, abortion opponents are stepping up their efforts to make that illegal, too. This week, Lubbock County in Texas became the fourth Texas county to make it illegal to use its local highways to assist someone in traveling out of state for an abortion. On the one hand, even some anti-abortion lawyers doubt that this is constitutional. But on the other hand, a lot of these laws are more intended to chill behavior than to punish it, right, particularly in Texas?

Ollstein: Yes, like a lot of state laws and now municipal laws that are being passed in the post-Roe era, enforcement and the practicality of enforcement is not, necessarily, something that folks are very focused on because the chilling effect is the main goal. And I think this is true for bans on receiving abortion pills by mail. Unless you’re going through everyone’s mail, you wouldn’t really know. And so these travel bans, travel restrictions, as well, there has been a lot of heated rhetoric about, oh, are they going to set up checkpoints and give pregnancy tests to people? No, they’re not. If they were, please message us and tell us so we can report on it, but we haven’t seen that.

And I think the idea is that people are already scared. People are already confused about what’s legal and what’s not. We know that from polling. And so this just adds to that confusion, and if somebody is already unsure of what they’re allowed to do, this could be a further deterrent from them even pursuing the possibility of an abortion.

Rovner: Well, this will obviously continue. Let’s move on to Medicaid for a minute. Six months into the “unwinding,” an estimated 9 million Medicaid recipients have been removed from the rolls, some of whom are no longer eligible, but most of whom might still qualify, but either fell through the cracks or states were unable to locate them. Meanwhile, a new report from the Robert Wood Johnson Foundation finds that if the 10 states that are still holding out from expanding Medicaid under the Affordable Care Act were to go ahead and expand, nearly 2.5 million more low-income adults would be added to the rolls and the uninsurance rate would drop by 25%.

One of those holdout states, Georgia, is trying to expand using a pilot program with work requirements for those who want to enroll. But so far, three months in, only about 1,300 people have enrolled out of an estimated 100,000 that are potentially eligible. Why is this off to such a slow start?

Cohrs: I think the story that you highlighted from The AP gave some reasons about just the paperwork having to be filed. And honestly, having looked at some safety-net programs, it is a lot to pull together if you’re pulling financial records and all of that. So I think there’s also just the bureaucratic issues that we see with these kinds of programs that are designed to keep people out almost. And I think it’ll be an interesting test case as it continues to move forward, whether uptick increases, whether outreach catches up, and whether nonprofit groups, grassroots organizations in the state can help people navigate the process. But certainly, the paperwork burden isn’t to be underestimated here.

Rovner: Alice, you covered when Arkansas tried to implement this for everybody and it did not go well because even the people who were working, the people who were technically able to fulfill the work requirements, had trouble reporting the fact that they were fulfilling the requirements. Do you think that’s going on at the beginning of the process here, in Georgia, whereas in Arkansas, everybody was suddenly required to do it?

Ollstein: Yeah. I think it’s definitely something to watch because, well, first of all, we know from years of data that the people within Medicaid who can work, are already working. The breakdown of those who are not employed, it’s children, it’s the elderly, it’s people with disabilities, it’s people caring for people with disabilities or an elderly relative, and so this is a massive effort that could, maybe, increase the workforce by a very small number of people. And so some of this is ideological about these kinds of benefits and who is deserving and undeserving and different opinions about that. But in terms of economics and cost-saving, we do not expect this to have a big benefit. And so it’s definitely worth watching if people are falling through the cracks, because in Arkansas people didn’t even know about the requirement or they didn’t have the internet access to be able to report their hours. Lots of different ways.

Rovner: And, of course, in Arkansas, people lost their coverage. Here in Georgia, it’s a matter of people not getting the coverage who are potentially eligible. So yeah, I think we will watch to see how this goes.

Well, back here in Washington, the National Institutes of Health appears on the road to having a Senate-confirmed director for the first time in a year and a half, as the Senate Health, Education, Labor and Pensions Committee voted 15 to 6 on Wednesday to elevate National Cancer Institute chief Monica Bertagnolli to the top spot. Interestingly, one of those no votes came from committee chairman Bernie Sanders, which is pretty much unheard of for a committee chair of the same party as the nominating president. Rachel, what is he trying to prove here, and might it threaten her nomination on the Senate floor, or do we think this is a relatively done deal?

Cohrs: With your first question, I think he, for months, delayed even having this hearing, having this confirmation vote because he wanted to use the only lever he has, which is holding up nominations to pressure the Biden administration to take a more hard-line stance at the NIH and include language in contracts with drugmakers to require some sort of fair pricing or ensuring the U.S. gets the best price when the NIH is investing money in various stages of drug development. So I think that has been his goal. And I think the Biden administration, specifically HHS [Department of Health and Human Services], threw him a bone with a covid therapeutic that’s in the works from Regeneron, but it’s not what he was hoping for. And I think he put out a letter criticizing the NIH granting an exclusive license to a company where a former employee of the NIH works who worked on the medication.

And so I think he is just trying to continue to use what leverage he has, but I think the vote — that this week was a very good vote for her because we saw several Republicans join Democrats in passing her through. Again, nominations only have a 50-vote threshold in the Senate, so they don’t need a whole lot of Republicans, and Sanders, I think, was the only Democrat to oppose her in committee. So it looks like smooth sailing for her whenever they can find floor time for her.

Rovner: Yeah, and I should point out that it is a time-honored tradition in the Senate to hold up a nomination for something that’s unrelated to the person who’s being nominated, for a senator to try and get something out of the administration. What’s odd is when it’s a senator of the same party. Usually it’s somebody from the opposite party of the president trying to stall a nomination in order to get something else that they want. So this was very unusual, I must say.

Cohrs: It was, and I will say, too, that given how politicized the NIH has become with unifunction[al] research or there’s a million things that Republicans could have chosen to take an ideological stance on. We saw this with FDA Commissioner Robert Califf’s confirmation, with CMS chief Chiquita Brooks-LaSure; John Cornyn came out of nowhere and was trying to make demands of her. So we just haven’t seen the full extent that we could have seen from the GOP and trying to hold up her nomination or extract something from the Biden administration.

Rovner: Well, it does still have to get through the floor, so there is time, yet, although I agree with you, it doesn’t look like it’s going to be a huge problem.

Well, finally, this week we are launching a new segment that I’m calling “This Week in Health Misinformation.” Our first featured story is from my KFF Health news colleague Liz Szabo, and it’s called “Suzanne Somers’ Legacy Tainted by Celebrity Medical Misinformation.” It turns out that Somers, who died earlier this month, spun her sitcom fame into an entire career pushing questionable medical treatments and forgoing chemotherapy when she was diagnosed with breast cancer. Basically, in the words of one doctor quoted in this story, “She became an influencer on menopause before being an influencer was even a thing.” And lots of people who believed her were probably worse off because of it.

This is obviously something that continues to this day. We see lots of celebrities pushing dubious things. It used to just be those who were rich enough or who worked for a company that was wealthy enough to advertise on TV, even if it was in the middle of the night, but now we have social media, and this kind of misinformation is pretty rampant, right?

Cohrs: It is. I thought Axios actually had an interesting piece this week, as well, about anecdotal reports of doctors where patients are interested in getting off of birth control pills, even with everything that we’re seeing with the overturning of Roe v. Wade. And I think, again, that story you mentioned, the influencer space where people are trying to sell apps, trying to sell alternatives, spreading information about how it affects your hormone levels. And I think patients don’t have a primary care doctor where they can ask some of these questions in an evidence-based place. I think, certainly, people of all ages are getting information from these influencers on social media, and I think that it is a very interesting trend to see how that’s going to play out from doctors’ side.

Like you said, we’ve seen drug companies advertise on TV for a long time trying to influence the care that patients are getting in the office. But I think we’re seeing these other sources start to influence the choices that patients are making. It’s a really interesting trend.

Ollstein: And I think these influencers and purveyors of misinformation, they’re really taking advantage of real frustrations with the formal medical system and how it has cared for women and our needs over time and ignored people’s complaints and dismissed them, and the fact that technology has not advanced on a lot of these fronts for a long time. So I think that leaves an opening for folks to come in and take advantage of that frustration and confusion and offer a solution that may possibly be even worse.

Rovner: All right, well that is this week’s news. Now we will play my interview with my favorite libertarian health policy expert, Michael Cannon, and then we will come back with our extra credits.

I am thrilled to welcome to the podcast Michael Cannon, who’s director of health policy studies at the Cato Institute, the libertarian think tank here, in Washington. He’s the author of a new book about how to fix our broken health care system and one of my favorite people to argue with about health policy. Michael, welcome to “What the Health?’” It’s great to have you here.

Michael Cannon: Great to be here.

Rovner: So we’ll get to the book in a minute, but first, tell us the difference between the libertarian view of health care and the traditional Democratic or Republican view. I think a lot of people don’t understand that.

Cannon: Well, that actually is a good intro to the book, because the book provides a broad overview of health care, but it starts from the very simple principle that you have rights when it comes to your health care, and the most important right you have is the right to make your own health decisions. That’s where libertarians start, and that means that libertarians end up agreeing with Republicans on some things, and Democrats on other things, because neither party really takes that principle and carries it throughout all aspects of the health care debate. So we might end up agreeing with Republicans that states should not expand the Medicaid program, but we end up agreeing with Democrats.

I would say that people end up agreeing with us that women should get to make their own decisions when it comes to contraceptives, and the government should not be requiring women — if you’ve got a willing seller of oral contraceptives and a willing buyer, the government has no business stepping in between them and requiring women to get a permission slip from a government-appointed gatekeeper, what we call a prescription from a doctor, in order to buy oral contraceptives. In 100 other countries around the world, women can purchase oral contraceptives without a permission slip from a government-appointed gatekeeper without a prescription. But in the United States, the government takes away women’s right to do that. And so Democrats uphold that principle that people should give to make their own health decisions in that realm, but not in others.

Rovner: And should there be an FDA? Should there be a government referee to decide what’s safe?

Cannon: So there should be referees and there should be better referees than the one we have, and that’s actually something that I cover in the book. When you give the government the power to decide whether drugs can come onto the market or not and use the criteria of whether they are safe and effective before they can come onto the market, what ends up happening is the government imposes its values on people, its values about what is safe enough and what is effective enough. And while it does keep some unsafe drugs off the market, and that’s good, it saves lives that way. It also keeps a lot of safe and beneficial drugs off of the market in ways that harm people.

Another example of this is, again, contraceptives. Not just how the government is requiring women to get a prescription in order to buy oral contraceptives, but for a long time, the government was prohibiting emergency contraception, then prohibiting it without a prescription, and then prohibiting it unless you were of a certain age, and there was this huge fight. You covered this story.

Rovner: For many years.

Cannon: To get the government out of the way here, but it’s even worse than that. If you look at the original introduction of the oral contraceptive pill in 1960, there were other countries that had approved the pill earlier. And so when the FDA delayed the introduction of that product onto the market, that had a huge impact. Not only did it violate people’s rights, which is really important — it violates the principle of equality when the government does that — but keeping that beneficial product off the market had tremendous costs. The most recent winner of the Nobel Prize in economics, Claudia Goldin, did a lot of research showing that when the pill finally came onto the market, women were able to delay marriage. They were able to delay conception and marriage and invest in education, and we saw huge gains in women’s equality as a result of that. But when the FDA kept that drug off the market, it delayed the cause of women’s equality.

So do we want someone to provide safety and efficacy assurance? Absolutely. And if we left this to people outside of the government, not only would that system be consistent with your right to make your own health decisions, but we would get better safety and efficacy certification. And I talk about one of the ways that would happen in the book using the example of Vioxx. This is a non-steroidal anti-inflammatory drug that the FDA pulled off the market years ago. Most people, when I ask this question, don’t know the answer, but I bet you do, Julie. Do you remember where they got the evidence showing that Vioxx led to adverse cardiac events, that it was killing people?

Rovner: I do not remember.

Cannon: It was Kaiser Permanente. Kaiser Permanente, which has been investing in electronic health records since the 1960s. Once there were questions about whether Vioxx was causing heart attacks, they said, “Well, you know what? We’ve got all these records. We’ve got lots of people who’ve been taking Vioxx. Let’s do a retrospective observational study, trying to control for everything that we can, and we’ll see if there’s an impact.” And they found there was one, and that convinced the FDA that this drug that the FDA had led on the market, was, in fact, killing people. And so here you have a market-generated way of testing drugs and certifying safety and efficacy that beat the FDA, that did a better job than the FDA did at keeping unsafe drugs off of the market.

Rovner: The FDA will argue that the whole point of the way they approve drugs is that you’re supposed to test them after they get on the market, when they’re in a bigger population, in case there were things that were not seen in the original studies.

Cannon: But there’s definitely a flaw in the FDA’s model is they do randomized controlled trials, or they require randomized controlled trials, that have a few thousand patients in them that will not, cannot detect effects like those of Vioxx because the effects are so small and you will not be able to detect it until hundreds of thousands or millions of people are taking that drug. And so that is a flaw in the FDA’s model.

It’s a flaw in the whole idea of giving government the power to make these decisions and relying on government for safety and efficacy certification because if the government had never gotten involved, if we had left this completely to market forces, then I argue in the book that institutions like Kaiser Permanente, that have the motive and the means and the opportunity to test drugs … all along the way, they would not stop, like the FDA does, at testing it a few thousand people, they would keep monitoring drugs throughout, as the population taking those drugs increases, and they would catch the harmful side effects of drugs a lot faster than the FDA did. But we only have one Kaiser Permanente right now. And the reason we do is because a raft of things that the government has done to violate people’s rights to choose that sort of health plan.

Rovner: And also, we have a vast market in electronic medical records. They were all supposed to be able to talk to each other and they can’t, but let’s not go there. I don’t want to get too far off track.

Cannon: But the electronic records we have right now are there because government spent so many years suppressing them, by suppressing plans like Kaiser, that naturally invested in them, and then woke up one morning and said, well, gosh, we spent decades suppressing electronic health records, and I do talk about this in the book. Why don’t we subsidize them, now? And so now Medicare is subsidizing meaningful use of electronic medical records and they’re still not doing what the Kaiser records do because they’re not interoperable and they don’t focus on a defined patient population so that you can monitor them over time and detect these sorts of effects. That’s another wonderful illustration, electronic health records are, of the things that go wrong when you let government make these decisions for people.

Rovner: So, and I think you’ve already gotten to this. One of the biggest complaints about our health care system now is how ridiculously complicated it is for the average patient to navigate. How would what you’re supporting make that easier?

Cannon: So every economic system, whether we’re talking about socialism and communism on one of the end, and totally free markets on the other end, and things like mixed welfare states or crony capital, it doesn’t matter what economic system you’re talking about, it’s going to serve whoever controls the money. And so if you want a system that is simpler for consumers to understand, then you have to set up a system where nobody gets any money unless consumers understand, unless they’re providing consumers what the consumer wants.

The U.S. health sector consumes about $4.6 trillion, at this point. It’s about one-sixth of GDP on its way to six-sixths of GDP. And most of that money, the consumers don’t control it. One of the things that I write about in the book is I include some OECD [Organization for Economic Cooperation and Development] data that shows that in the United States, government controls, directly or indirectly, about 85% of health spending. That’s the eighth-highest of all OECD countries. Is just two or three percentage points behind the No. 1 country, which I think is Norway or Germany. It keeps changing from year to year. But that’s a larger share that, in countries like the U.K. and Canada that have explicitly socialized systems. So here we have the government compelling people to spend 85% of what we spend on health care the way the government wants, or the way that employers want, and that the industry ends up capturing those decisions about how people have to spend those resources, and we wonder why the system isn’t serving consumers very well.

So what I propose in the book is a number of things, a number of changes that would return that $4.6 trillion that we spend every year on health care to the consumers so that the system would serve them. You have to change the tax code to do that, you have to change the Medicare program and other things to do that, but I think that’s the only way to make things simpler for consumers. And there’s evidence in the book that when consumers are in control of the money, the system does become simpler for them. It provides them the price information they want and becomes easier for them to navigate.

Rovner: So transparency, which I know is a linchpin to a lot of this, and that you’ve been talking about for many more years than, I think, before it even got trendy. It’s one of the few things that Republicans and Democrats have agreed on for years, but it’s been much harder to make happen than I think anybody expected. Even with the power of government, we’re seeing, for example, hospitals pretty flagrantly ignoring the rule that they’re supposed to post prices in a consumer-accessible way. If the government can’t make it happen, how can consumers make it happen?

Cannon: I’m so glad you asked, Julie, because there’s evidence in the book on that. There’s this, what I call the most important chart you’ve never seen in health policy. It collects the results from a series of studies that employers like Safeway and the CalPERS system, for health benefits for California state employees, they did a series of experiments that put the patient in control of the money that they were going to be spending on — things like lab tests and colonoscopies, a knee and shoulder or arthroscopy, MRIs, CT scans, hip and knee replacements.

Rovner: Shoppable services, right?

Cannon: Yeah, what we call shoppable …

Rovner: They’re not emergencies, right?

Cannon: What we call shoppable services. Because the insurance companies and these employers could not get the prices down for these services, try as they might. They had hospitals charging them $60,000 for a hip and knee replacement when others were charging 12, and there was no difference in quality. The hospitals were just exploiting their market, or monopoly, power.

So what CalPERS did in the case of hip and knee replacements was they said, “Look, the hip and knee replacement candidates can go to any hospital they want, but we’re going to pay $30,000 no matter where they go. And if they go to a hospital that charges more than that, then they have to pay the balance.” As soon as the consumer had an incentive to care about price, an amazing thing happened. Not just with hip and knee replacements, but with everything else. They started demanding price information from hospitals. The hospitals began giving them the price information, making prices transparent, and then the consumer started changing their behavior by switching from the high-priced hospitals to the low-priced hospitals. And then the most amazing and glorious thing, and it’s why this is, that chart is the most important chart in health care, hospitals began dropping their prices.

The high-priced hospitals dropped the price for hip and knee replacements by $16,000 per procedure. On average, that was a 37% reduction in just two years. When do you ever see prices falling like that in health care? And if you care about universal health care, then that chart is the most important chart you have ever seen because if you care about your universal health care, nothing is more important than falling prices. But that series of experiments also illustrates that if you care about price transparency, then you want to change who controls the money so that it’s the consumer, so that health care providers have to provide transparent prices and other information that consumers want, or else they’re not going to make any money.

Rovner: So, we’ve both been around Washington for a very long time, and we know that, with very few exceptions, things only happen extremely incrementally. That’s the only way anything gets through either the Congress or the administration or, God forbid, both. So what would be one thing that you think we could do to put the system on a path to where you think it would work better?

Cannon: So in the book, you will not find Michael’s perfectly ideal conception of what a health care sector would look like. I do try to — and I should mention, the book takes that principle that you should be able to make your health decisions, and it applies them throughout the health sector. It looks at clinician licensing at the state level, state health insurance, licensing and regulation laws, health facilities regulation, medical malpractice, the tax code, Medicare, Medicaid, veterans’ benefits. And I would love to have a conversation about that sometime because that’s particularly topical, nowadays. But in each case, I don’t try to present what is the perfect libertarian idea. I try to put out there what I think is the biggest step that people would be willing to talk about, and then some incremental steps that we could take along the way. And in some cases, those incremental steps are actually pretty small, but in other cases, the incremental steps are a little bigger because it wouldn’t make sense to make them any smaller.

And well, let me give you an example. The tax code imposes a payroll tax and an income tax on every dollar of cash that you earn from your employer, up to a point, to be technically accurate, Social Security tax ends at a point. But it does not tax that dollar if your employer provides it to you in the form of health insurance. And what this arguably does is it creates what is, functionally, a mandate. Either you take some portion of your money of your compensation as health insurance, or if you want to take that money as cash and buy your own health insurance, you have to pay higher taxes, and that’s effectively a penalty if you don’t enroll in the kind of health plan the government wants you to enroll in. And I call this the original sin of U.S. health policy because that one mistake, which is an accident that Congress and the Treasury Department stumbled into, has caused just about every form of dysfunction that you will find in the U.S. health sector, and what it doesn’t cause, it made worse. And so the worst part might be that it separates workers from a trillion dollars of their earnings and lets employers control that trillion dollars year after year.

So what I propose is to change the tax code in a way that lets workers control that trillion dollars, lets them choose their health plan, and that levels the playing field between employer-sponsored insurance and other forms of insurance so they’re able to purchase health insurance that doesn’t disappear when their job does. And that might sound like a pretty big step, and I think that, kind of, it is, but it’s not as big as most people would think, I imagine, because the way I propose doing this would, I think, cap the exclusion for the first time, which is something that appeals to Democrats. They tried to do that in the Affordable Care Act. It didn’t work because it was just pure austerity, if all you do is tax health benefits. But what this proposal would do is return that trillion dollars to workers, which is, in effect, a tax cut and a progressive tax cut because it would mean more to low-income workers than high-income workers.

The average amount that employers spend on family coverage for their workers is $17,000 per year. The most recent [KFF] report just came out said, now, up to $17,000 per year, and that’s $17,000 of the worker’s earnings. So returning that money to the worker so they can control it, that’ll mean a lot to someone making six figures, but it’s going to mean a hell of a lot more to someone making $50,000 a year. They get to control a much larger share of their income. So it’s a progressive tax, but it also benefits people with expensive medical conditions more because they would get a bigger cash out than the average. Women, people with obesity, and so forth, that the economic research shows us they are actually losing control over a larger share of their earnings.

So the approach that I propose to reform the tax code might seem like a big step. I don’t think it’s going to happen in this Congress, but I think once people get their heads around how it actually serves both Democratic priorities and Republican priorities that may not only happen, but happen on a bipartisan basis.

Rovner: I can’t resist asking this question because economists love the idea of doing something about the employer tax exclusion for — I think it’s the largest single tax expenditure in the federal budget. But in the past, they’d always said, but what will consumers do if you give them back this money? There’s no market for them. Well, thanks to the Affordable Care Act, now there is a market for them, but you hated the Affordable Care Act. Would you not acknowledge, at some point, that now at least it’s more doable because if you give them back that money, there’s someplace for them to go and spend it on?

Cannon: So if people know me for anything, the role I played in trying to roll back or eliminate the Affordable Care Act. And so if folks who love Obamacare want some reason to dismiss what I have to say, there’s that. That’s there. I still think there’s a lot in the book for fans of Obamacare, but I gladly concede your point, Julie. One of the hardest parts about reforming the tax exclusion for employer-sponsored insurance is that if you do that, if you level the playing field between the employer market and the individual market for health insurance, there is a risk that some employers might drop their health plans and leave people with expensive medical conditions high and dry. That was the fear that Barack Obama exploited to great effect against John McCain in the 2008 presidential campaign, when John McCain proposed a universal tax credit. I think that was a bad proposal, and I’m not sorry that it failed, but listeners who don’t recall should look up “Barack Obama yarn commercial” and they’ll be able to see that 30-second television spot.

But as much as I do not like the Affordable Care Act, or Obamacare, as much as I think it has increased the cost and reduced the quality of health insurance, for everybody, I must concede that, now that it exists, it makes reforming the tax exclusion for employer-sponsored health insurance a lot easier. Because if someone says to me, Cannon, why should we go along with this plan of yours? What if employers drop coverage? I would say, well, first of all, employers are not likely to drop coverage. The Affordable Care Act has taught us that. Everyone thought that after Obamacare passed, employers would drop coverage. They really haven’t in the numbers we expected. But even if they do, there is that heavily regulated, heavily subsidized market that we call the exchanges that will be there for people whose employers do drop their coverage. So that becomes one less reason not to reform the tax exclusion.

Rovner: Such a good example of how it’s going to take everybody’s ideas to actually make all of this work. Michael Cannon, thank you so much. This has been fun. I could go on, I know you could go on, but we should stop now. We’ll have you back soon.

Cannon: That’d be great. Thank you so much, Julie.

Rovner: OK, we are back. It’s time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org, and in our show notes on your phone or other mobile device. Alice, why don’t you go first this week?

Ollstein: Sure. So I chose a piece by my colleagues on our technology team about a massive set of lawsuits filed against Meta, which owns Facebook and Instagram. So this is challenging them for lying about their practices regarding children on their platforms, and not doing enough to prevent mental health problems for those children. And the massive array of lawsuits here, from state attorneys general, is being compared to the tobacco lawsuits that resulted in massive settlements and policy changes. And so it remains to be seen if this will result in the same, but I think there’s just been a lot of focus, especially recently, on how these platforms are designed to be addictive, are designed to push content that is outrageous, upsetting, etc., just to keep people scrolling and scrolling and scrolling, and especially how that’s impacting children. We’ve had a lot of concerns about mental health during the pandemic where kids were out of school, and thus, getting sucked into these sort of apps even more. So definitely something to follow.

Rovner: It is. Rachel.

Cohrs: So my story this week, the headline is “Ozempic and Wegovy Don’t Cost What You Think They Do,” from The New York Times and Gina Kolata. I thought this story was interesting. It essentially is a writeup of a study by the American Enterprise Institute just pointing out that net prices for these popular weight loss drugs are lower than their list prices, which may be true. And I think that she points out this interesting historical precedent with hepatitis C medications where they were really transformative, and initially …

Rovner: And crazy expensive.

Cohrs: Yes, very expensive. Also curative, which these drugs are not. But once more competition came on the market, prices did eventually go down, was the example of competition working, how, in theory, it should in this space. And certainly, we could see a similar dynamic play out with these medications. But one thing I think that just personally frustrates me as a reporter is the pharmaceutical industry likes to talk about how net prices are so much lower than list prices, and they’re so frustrated with the focus on list prices, but they never want to tell us what the net prices are. And I think that just puts reporters in a really difficult position where we don’t really know what truth is. And obviously, insurance companies are trying to spin things their own way, and pharma companies are trying to spin stuff their own way and nobody wants to show us the numbers. So I think that puts us in a difficult position.

Also, just would like to point out that a lot of employers’ insurance plans don’t necessarily cover these medications. It has been an uphill battle. Certainly there’s been progress, some state benefits plans, but there are cost concerns with these medications and I think there’s just some counter-programming here, with a new argument about the cost effectiveness long term. I thought it was an interesting point, not one that necessarily is new. And if insurance companies are covering these drugs, then patients are still stuck paying the out-of-pocket price. So interesting thought and would be good to include in cost-benefit analyses going forward. But again, if insurance companies, if pharmaceutical companies aren’t going to give us the numbers, then it just makes it really difficult to crunch those.

Rovner: I was actually interested in this story because one of the big things that I feel like people keep missing with these drugs is that they’re making these long-term assumptions that these drugs are always going to cost what they cost now. And there’s no — which is a lot of money, and would be prohibitively expensive if everybody who’s eligible for them were to take them. Obviously, we can’t afford that, but at some point, there is some competition and if they keep developing drugs, the cost will come down, and then it will be a whole lot easier for people to afford things. And then the cost-benefit analysis changes. So …

Ollstein: It might.

Rovner: Yeah.

Ollstein: We don’t really know.

Rovner: I get frustrated at people who assume that the price is what it is and that’s what it’s going to be going forward, because I suspect that is not the case. But I think you’re right. It will be high as long as they can keep it a secret.

All right, my extra-credit story is from The Washington Post this week by Greg Jaffe and Patrick Marley, and it’s called “The Pandemic Has Faded in This Michigan County. The Mistrust Never Ended.” It’s a long and beautifully written chronicle of just how enough people in Ottawa County in Michigan were convinced that public health is the enemy to result in, basically, a taking apart of the county’s health department. It is well worth reading the whole thing. It’s really heartbreaking.

All right, before we go this week, I have a sneak peek at some of the finalists for our KFF Health News Halloween Haiku Contest. The winners will be unveiled on Halloween, Oct. 31, but here’s one finalist from Michael Lisowski:

A trick or treatment,prior authorization,a fright to patients.

And here’s another, from Meg Murray:

Open enrollment,watch out for ghosts, goblins, andjunk insurance … [boo!]

OK. That is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks, as always, to our tireless engineer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can still find me at X, @jrovner or @julierovner at Bluesky and Threads. Alice, where are you these days?

Ollstein: I am @AliceOllstein on X and @alicemiranda on Bluesky.

Rovner: Rachel?

Cohrs: I’m @rachelcohrs on X.

Rovner: We will be back in your feed next week. Until then, be healthy.

Credits

Francis Ying
Audio producer

Stephanie Stapleton
Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

A 48 horas de su nacimiento en un hospital del área de Seattle en 2021, Layla Babayev fue sometida a una cirugía por una obstrucción intestinal. Dos semanas después, tuvo otra cirugía de emergencia. Luego desarrolló meningitis.

Layla pasó más de un mes en terapia intensiva neonatal en tres hospitales mientras los médicos buscaban la causa de su enfermedad.

Sus padres la inscribieron en un ensayo clínico para buscar una condición genética. A diferencia de las pruebas genéticas centradas en algunas variantes causantes de enfermedades, que pueden tardar meses en producir resultados, el estudio en el Hospital de Niños de Seattle secuenciaría todo el genoma de Layla, buscando una amplia gama de anomalías, con la posibilidad de ofrecer respuestas en menos de una semana.

La prueba reveló que Layla tenía un trastorno genético raro que causaba defectos gastrointestinales y comprometía su sistema inmunológico. Su padre, Dmitry Babayev contó que, por este hallazgo, sus médicos la aislaron, comenzaron administrarle infusiones semanales de antibióticos, y se pusieron en contacto con otros hospitales que habían tratado la misma condición.

Hoy en día, Babayev atribuye a la prueba, conocida como secuenciación rápida de todo el genoma, la vida de su hija. “Es por eso que creemos que Layla todavía está con nosotros hoy”, dijo.

Sin embargo, la experiencia de Layla con su trastorno es rara. Pocos bebés hospitalizados con una enfermedad sin diagnosticar se someten a la secuenciación rápida de todo el genoma, una herramienta de diagnóstico que permite a los científicos identificar rápidamente trastornos genéticos y guiar las decisiones de tratamiento de los médicos al analizar todo el ADN del paciente.

Esto se debe en gran parte a que muchos seguros de salud, públicos y privados, no cubren el costo que oscila entre $4,000 y $8,000.

Pero una alianza de empresas de pruebas genéticas, farmacéuticas, hospitales infantiles y médicos ha presionado a los estados para aumentar la cobertura bajo Medicaid, y estos esfuerzos han comenzado a dar resultados.

Desde 2021, programas de Medicaid en ocho estados han agregado la secuenciación rápida de todo el genoma a su cobertura o la cubrirán pronto, según GeneDX, un proveedor de la prueba. Esto incluye a Florida, donde la legislatura controlada por los republicanos ha resistido la expansión de Medicaid bajo la Ley de Cuidado de Salud a Bajo Precio (ACA).

Georgia, Massachusetts, Nueva York y Carolina del Norte también están considerando cubrirla, según el Rady Children’s Institute for Genomic Medicine, otro importante proveedor de la prueba.

Que Medicaid cubra la prueba puede expandir significativamente el acceso para los bebés; el programa de salud federal gerenciado por los estados que asegura a las familias de bajos ingresos y que cubre a más del 40% de los niños en su primer año de vida.

“Esta es una prueba extraordinaria y poderosa que puede cambiar el curso de las enfermedades de estos niños y nuestra propia comprensión”, dijo Jill Maron, jefa de pediatría en el Women & Infants Hospital en Providence, Rhode Island, quien ha investigado sobre este test.

“Lo único que está interfiriendo con un uso más generalizado es el pago del seguro”, agregó.

Los defensores de la secuenciación de todo el genoma, que ha estado comercialmente disponible por alrededor de seis años, dicen que puede ayudar a los bebés enfermos con enfermedades potencialmente raras a evitar una odisea de pruebas y hospitalizaciones de meses o años sin un diagnóstico claro, y aumentar la supervivencia.

También señalan estudios que muestran que las pruebas rápidas de todo el genoma pueden reducir los costos generales de salud al disminuir las hospitalizaciones, pruebas y atención innecesarias.

Pero la prueba puede tener sus limitaciones. Aunque es mejor para identificar trastornos raros que las pruebas genéticas antiguas, la secuenciación de todo el genoma detecta una mutación solo alrededor de la mitad de las veces, ya sea porque la prueba no detecta algo o porque el paciente no tiene un trastorno genético en absoluto.

Además, plantea preguntas éticas porque también puede revelar que los bebés, y sus padres, tienen genes que los colocan en mayor riesgo de condiciones que se desarrollan en la adultez, como el cáncer de mama y ovario.

Aun así, algunos médicos dicen que la secuenciación ofrece la mejor oportunidad para hacer un diagnóstico cuando las pruebas de rutina no ofrecen respuestas. Pankaj Agrawal, jefe de neonatología en la Escuela de Medicina Miller de la Universidad de Miami, dijo que solo alrededor del 10% de los bebés que podrían beneficiarse de la secuenciación de todo el genoma la están recibiendo.

“Es súper frustrante tener bebés enfermos y no tener una explicación de qué está causando sus síntomas”, dijo.

Ahora, algunos seguros privados cubren la prueba con ciertas limitaciones, incluidos UnitedHealthcare y Cigna, pero otros no. Incluso en los estados que han adoptado la prueba, la cobertura varía. Florida agregará el beneficio a Medicaid más adelante este año para pacientes de hasta 20 años que estén en terapias intensivas.

Adam Anderson, representante estatal de Florida, un republicano cuyo hijo de 4 años murió en 2019 después de ser diagnosticado con la enfermedad de Tay-Sachs, un trastorno genético raro, lideró la campaña para que Medicaid cubriera la secuenciación. El nuevo beneficio de Medicaid estatal lleva el nombre de su hijo, Andrew.

Anderson dijo que persuadir a sus colegas republicanos fue un desafío, dado que generalmente se oponen a cualquier aumento en el gasto de Medicaid.

“Tan pronto como escucharon el término ‘mandato de Medicaid’, se cerraron”, dijo. “Como estado, somos fiscalmente conservadores, y nuestro programa de Medicaid ya es enorme, y queremos ver Medicaid más pequeño”.

Anderson dijo que a los médicos les llevó más de un año diagnosticar a su hijo, un momento emocionalmente difícil para la familia mientras Andrew soportaba numerosas pruebas y viajes para ver a distintos especialistas en varios estados.

“Sé lo que es no obtener esas respuestas mientras los médicos intentan descubrir qué está mal, y sin pruebas genéticas, es casi imposible”, dijo.

Un análisis de la Cámara de Representantes de Florida estimó que si el 5% de los bebés en las terapias intensivas neonatales del estado se sometieran a la prueba cada año, costaría al programa de Medicaid alrededor de $3.3 millones anuales.

Los líderes legislativos de Florida se persuadieron en parte por un estudio de 2020 llamado Proyecto Baby Manatee, en el cual el Hospital de Niños Nicklaus en Miami secuenció los genomas de 50 pacientes. Como resultado, 20 pacientes, aproximadamente el 40%, recibieron un diagnóstico, lo que llevó a cambios en el cuidado de 19 de ellos.

El ahorro estimado superó los $3.7 millones, con un retorno de inversión de casi $2.9 millones, después del costo de las pruebas, según el informe final.

“Hemos demostrado que podemos justificar esto como una buena inversión”, dijo Parul Jayakar, directora de la División de Genética Clínica y Metabolismo del hospital, quien trabajó en el estudio.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

The Host

Julie Rovner
KFF Health News

@jrovner

Read Julie's stories.

Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

As House Republicans struggle — again — to decide who will lead them, the clock is ticking on a short-term spending bill that keeps the federal government running only until mid-November. The turn of the fiscal year has also left key health programs in limbo, including the one that provides international aid to combat HIV and AIDS.

Meanwhile, a major investigation by The Washington Post into why U.S. life expectancy is declining found that the reasons, while many and varied, tend to point to a lesser emphasis on public health here than in many peer nations.

This week’s panelists are Julie Rovner of KFF Health News, Sarah Karlin-Smith of the Pink Sheet, Victoria Knight of Axios, and Lauren Weber of The Washington Post.

Panelists

Sarah Karlin-Smith
Pink Sheet

@SarahKarlin

Read Sarah's stories

Victoria Knight
Axios

@victoriaregisk

Read Victoria's stories

Lauren Weber
The Washington Post

@LaurenWeberHP

Read Lauren's stories

Among the takeaways from this week’s episode:

• House Republicans are choosing a new speaker with government funding still uncertain beyond Nov. 17. But some programs are already experiencing a lapse in their congressional authorizations, notably the global HIV/AIDS program known as PEPFAR — and the problems in renewing it are sending a troubling signal to the world about the United States’ commitment to a program credited with saving millions of lives.
• Drug companies have entered into agreements with federal health officials for new Medicare price negotiations even as many of them challenge the process in court. Early signals from one conservative federal judge indicate the courts may not be sympathetic to the notion that drug companies are being compelled to participate in the negotiations.
• Kaiser Permanente health system employees and pharmacists with major chains are among the American health care workers on strike. What do the labor strikes have in common? The outcry from workers over how staffing shortages are endangering patients, leaving overwhelmed medical personnel to manage seemingly impossible workloads.
• Elsewhere in the nation, new covid-19 vaccines are proving difficult to come by, particularly for young kids. Officials point to this being the first time the vaccines are being distributed and paid for by the private sector, rather than the federal government.
• Reporting shows those getting kicked off Medicaid are struggling to transition to coverage through the Affordable Care Act exchanges, even though many are eligible.

Also this week, Rovner interviews physician-author-novelist Samuel Shem, whose landmark satirical novel, “The House of God,” shook up medical training in the late 1970s. Shem’s new book, “Our Hospital,” paints a grim picture of the state of the American health care workforce in the age of covid.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too: 

Julie Rovner: The Atlantic’s “Virginia Could Decide the Future of the GOP’s Abortion Policy,” by Ronald Brownstein.

Sarah Karlin-Smith: The Wall Street Journal’s “Children Are Dying in Ill-Prepared Emergency Rooms Across America,” by Liz Essley Whyte and Melanie Evans.

Lauren Weber: ProPublica’s “Philips Kept Complaints About Dangerous Breathing Machines Secret While Company Profits Soared,” by Debbie Cenziper, ProPublica; Michael D. Sallah, Michael Korsh, and Evan Robinson-Johnson, Pittsburgh Post-Gazette; and Monica Sager, Northwestern University.

Victoria Knight: KFF Health News’ “Feds Rein In Use of Predictive Software That Limits Care for Medicare Advantage Patients,” by Susan Jaffe.

Also mentioned in this week’s episode:

• The Washington Post’s “Medicaid Rolls Are Being Cut. Few Are Finding Refuge in ACA Plans,” by Amy Goldstein.
• The Washington Post’s “An Epidemic of Chronic Illness Is Killing Us Too Soon,” by Joel Achenbach, Dan Keating, Laurie McGinley, Akilah Johnson, and Jahi Chikwendiu.
• The Washington Post’s “How Red-State Politics Are Shaving Years Off American Lives,” by Lauren Weber, Dan Diamond, and Dan Keating.
• The Washington Post’s “England Considers Raising Smoking Age Until Cigarettes Are Banned Entirely,” by Andrew Jeong.

click to open the transcript

Transcript: Health Funding in Question in a Speaker-Less Congress

KFF Health News’ ‘What the Health?’Episode Title: Health Funding in Question in a Speaker-Less CongressEpisode Number: 318Published: Oct. 12, 2023

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Oct. 12, at 10 a.m. As always, news happens fast, and things might’ve changed by the time you hear this, so here we go.

We are joined today via video conference by Victoria Knight of Axios.

Victoria Knight: Good morning.

Rovner: Sarah Karlin-Smith of the Pink Sheet.

Sarah Karlin-Smith: Hi, everybody.

Rovner: And Lauren Weber of The Washington Post.

Lauren Weber: Hello, hello.

Rovner: Later in this episode, we’ll have my interview with doctor-author Samuel Shem, who wrote “House of God,” the seminal novel about medical training, back in the 1970s, and who has a new take on what ails our health care system. But first, the news. So, we’ve been off for a week so KFF could have an all-staff retreat in California, which was lovely, by the way. And against all odds, it’s Oct. 12 and the federal government is not shut down, although the continuing resolution that squeaked through Congress at the very last minute on Sept. 30 expires Nov. 17, so we could be going through all of this again next month.

Meanwhile, conservative Republicans, who were angry that House Speaker Kevin McCarthy agreed to keep the government open, ousted him from his job, the first time ever a speaker has been kicked out mid-Congress, and things are, to put it mildly, in disarray. But I want to go back to that six-week continuing resolution. It does just continue appropriations, but it also had some important, if temporary, authorizing provisions, like for community health centers, right, Victoria?

Knight: Yeah, that’s right. There were a few provisions that just kind of kept it going as it was, funded at the same level. That was community health centers, and there were a few for the Pandemic and All-Hazards Preparedness Act. Then there were also some things that were not renewed in PAHPA, and then also the PEPFAR program [the U.S. President’s Emergency Plan for AIDS Relief], which I figured we might talk about a little bit, which is the program that funds programs in other countries to help with HIV/AIDS treatment and research, and it’s been a long-standing bipartisan program, and it has come up against some obstacles this Congress.

Rovner: Just to remind people who don’t follow this as closely as we do, the appropriations are what actually keep the lights on. Those are the spending bills that Congress has to pass, either in permanent or temporary fashion, at the beginning of the fiscal year, Oct. 1, or things shut down. Things like PEPFAR and community health centers continue to get funded, but their official authorizations expired at the end of the fiscal year. While the community health centers were kept going, PEPFAR has not. Of course, the House, which is, as we speak, still leaderless, can’t really do anything. Are there, at least, negotiations going on? I know PEPFAR really is a bipartisan program, as you say, and there is some effort to keep it going, because some people frankly say it’s embarrassing for the United States to look like it is reneging on this, even though it’s technically not.

Knight: Well, I know it was originally started under a Republican president, George W. Bush, and has always been reauthorized for five-year intervals. That’s never not happened. I’ve talked to members of Congress about this. In the House, they only want to reauthorize it for one year, and they’ve been very open about that’s because they want a new Republican president to come in and further restrict where funding is going, to really, in their mind, ensure it’s not going to abortion funding, even though there’s really no evidence that funding from PEPFAR goes to NGOs [nongovernmental organizations] that fund abortions or anything like that.

Then, in the Senate, it’s a different story. Another little factor is that Sen. Bob Menendez was the lead on this, and then he had to step —

Rovner: Oops.

Knight: He had to step down from his chair of the Senate Foreign Relations Committee, and that’s just a matter of Senate rules, since he’s under indictment.

Rovner: Again.

Knight: Again, yes, and so Sen. Ben Cardin just took that chairmanship. I’m not sure how much PEPFAR is on his radar. I tried to ask him about it recently, and he was like, “I’ve got to go to a meeting.” I know for Menendez, it was a really big thing that he cared about and was like, “I want to reauthorize it for five years.” So, as far as I can tell, it’s kind of a standstill between the House and the Senate and, to be determined, but maybe at the end of the year, if we get a big bill, something will be put in there. Maybe they’ll negotiate it to three years. I’ve heard something about that, but again, this will be the first time it hasn’t been reauthorized for five years, and that would send a signal to other countries that maybe the U.S. is not as devoted to treating HIV/AIDS and helping programs in other countries.

Rovner: Yeah, obviously, with everything else going on in the world, it’s not the biggest deal, but there are still a lot of people who are very concerned about it. The other at least somewhat surprising thing that happened on Oct. 1, the beginning of the fiscal year, is that all of the drugmakers responsible for the 10 drugs that Medicare has selected for the first round of price negotiation have agreed to negotiate, at least for now. That’s likely because the first round of the first of several lawsuits in federal court seeking to block the program found in favor of the government. In other words, the program did not get blocked by the courts. But Sarah, this fight is a long way from over, right?

Karlin-Smith: Yeah, there’s a number of lawsuits. I think we might be up to eight now, but don’t hold me to that exact figure.

Rovner: Excel spreadsheets.

Karlin-Smith: Yeah. Even this lawsuit, the initial blow I think was pretty big for the drug industry here, because we have a Trump-appointed judge who made a pretty clear preliminary decision that he doesn’t think the drug industry can make its constitutionality challenges that this law is not constitutional, which I think is a pretty big deal, because most of the initial lawsuits revolved around constitutional challenges. Then, there are other issues, in the first particular case, around whether even the people who are suing have standing or it’s ripe for a lawsuit now, whether because anybody’s actually been harmed at this point. Yet, everybody, all the companies, have entered into agreements with Medicare to negotiate now. A lot of them have said, “Well, we’re doing this, but basically because we have no other choice. We have to. We’re doing it in protest. We’re still continuing our lawsuits.”

So, you can expect two parallel tracks to be going on right now, mostly behind the scenes. This is pretty much going to take a whole year for Medicare and the companies to get to the place where we’ll then see a public negotiated price next fall, next September. And these lawsuits to proceed, again, just I think the constitutionality issue got a really big blow. There are some other lawsuits that I think could be more interesting that are arguing more about decisions Medicare made, so more about APA, Procedures Act, cases, which are a little bit different and I think might have a little bit more chance of getting the drug industry some wins.

Rovner: The APA is the Administrative Procedures Act —

Karlin-Smith: Procedures Act, thank you.

Rovner: — and basically saying that Medicare didn’t follow all of the appropriate rules in how it devised and rolled out the program.

Karlin-Smith: Right, and I think —

Rovner: As opposed to the big lawsuits that said, “You can’t force us to do this,” which, not a lawyer, but every other health provider goes under the if you want to play in Medicare, you have to take our price, so it’s hard to see where the drug companies are going to have something completely different, but that’s just me. You never know.

Karlin-Smith: Right, and this Trump-appointed judge — I keep emphasizing that because they picked the 5th Circuit, they looked for a friendly judge, and they couldn’t get the win there. He said, “Medicare is a voluntary program. The government has stopped forcing you to participate in Medicare. If you don’t like this, you can leave.” I think this is a pretty symbolic loss for the industry and some of these arguments they’re going to make.

That said, these APA cases, you can maybe see them getting more tweaks around the edges to shift the program in ways that favor it, but we know the way litigation works in this country; it’s going to be this long slog to figure out how that shakes out as the program is potentially, again, on the other side, getting worked out and maybe implemented.

Rovner: We will see. All right. Well, elsewhere in disarray, if this was the summer of strikes in Hollywood, it’s shaping up as the autumn of strikes by health workers. Last week, 75,000 workers at Kaiser Permanente — no relation, just for my listeners — in several states walked out for three days. Workers at several other hospitals in and around Los Angeles walked out, and we’re seeing pharmacists taking work actions at both of the big chains, CVS and Walgreens. All of these walkouts have basically the same thing in common. Striking workers say that the shortage of personnel is endangering patients, as those who are left at work face impossible workloads.

These employers are not in a great situation to fix this. Covid accelerated the departure of a lot of healthcare workers, and there simply aren’t the bodies to fill all of these vacant positions. Is there any settlement in sight? Any way to fix any of this that anybody’s proposed?

Weber: I think if any of us sitting at this table have family, friends that work as nurses or pharmacists, they’ve been hearing about these problems for years. I mean, all it takes is talking to somebody that works in this industry to realize that they have been short-staffed and underfunded for a very long time. A lot of them really worry about the actual errors that can result from that. I mean, I think what’s really important to consider is to get to a strike, you have to have a lot of bad things going on. I mean, I think some of the reports say that some of these hospitals have filed countless complaints with the local county health in California that had not gotten listened to about their staffing shortages.

When you have short staffing for nurses, that means that you feel like patients are not getting seen. Something could be happening. They feel like they’re putting these people in jeopardy. I don’t really think there’s going to be a lot of end to this in sight. I think, once you kick off these strikes like this, it’s a bit of a chain effect. I mean, we saw CVS pharmacy employees had a strike, and then Walgreens employees have started doing that.

Frankly, the CVS one was pretty successful. The CVS CEO went out there and said, “Look, we hear your conditions. We’ll work on cutting down hours, and we’ll try and accommodate you.” I think we’re going to be in for a lot more of these in the months to come.

Rovner: Yeah, I mean, it’s one thing if workers — there aren’t enough checkers at the grocery store and you have to stand in line for longer, but it’s quite another thing when you have a nurse in an intensive care unit trying to keep track of six patients instead of three or a pharmacist trying to keep track of basically everything that’s going on with no help. That’s what we’re seeing around the country with these shortages of trained health care workers.

In California, there’s another complication, because they actually have laws about patient-nurse ratios in hospitals, and some of them are not being actually obeyed, so I imagine that this is going to go on. We hear a lot about health care worker shortages. I think this is the worst one that I’ve seen in my career, where there just really aren’t the bodies to meet the demand here.

Well, speaking of things that also aren’t going swimmingly — that seems to be our theme this week — there’s a lot of early demand for the new covid vaccine that was approved in September, and apparently not a lot of supply. Also, as we just discussed, a lot of the responsibility for the vaccine is being pushed to pharmacies, whose already overstretched staff simply don’t have the bandwidth to deliver vaccines in addition to all the drugs that they’re asked to be counting out and prescribing. Sarah, shouldn’t the system have been more ready for this? It’s not like we didn’t know pretty much exactly when this vaccine was going to become available. They’ve been saying mid-September for the last five months.

Karlin-Smith: Right, yeah. I mean, there’s definitely been a lot of criticism, particularly on the health insurance side with the codes and things not being set up to put it in. It’s less clear exactly what has gone wrong in the supply chain issue, where there are reports of wholesalers not being able to get supply to the pharmacies. Do you even have enough shots? Lots of people are reporting they have appointments. They get there. They show up. The pharmacist is out.

One thing I’ve been wondering is just there’s been low uptake of boosters in the U.S., and so if it’s been harder for them to predict how much supply they want to have, it’s a bit different when the government is no longer funding those shots. Pharmacies, doctor’s offices have been concerned. What if they buy more than they end up using? Are they out money? I know, in some cases, some of the companies have made some concessions and said, “We will take back unused product,” and so forth, because there’s just different financial considerations that I think are impacting how much supply is on hand at different times right now.

Rovner: And, of course, it’s even worse for kids, right? Because kids can’t go, generally, to the pharmacies to get their vaccines.

Karlin-Smith: Right. Most of the country, to get a vaccine by a pharmacist, you have to be at least 3. It varies a little bit by state and so forth. A lot of pediatricians’ offices don’t have these shots. One of the reasons it seems to be is that, again, these wholesalers who ship the supply around the country have prioritized adult vaccinations. I know, personally, my pediatrician’s office still does not have a shot, as well.

Rovner: And you have two little ones, right?

Karlin-Smith: Right. Again, I have one under 3, and I looked into vaccines.gov the other day to see what would they tell me if I put in for an under-3-year-old. There was one pharmacy in all of D.C. that claimed they would vaccinate someone under 3 for covid, which, I haven’t done the legwork yet to see if that’s actually correct, but, you know, you’re hearing these reports of people traveling really far to get pediatric shots. Again, just to emphasize that there are babies being born all the time who, when they turn 6 months, they are getting their first covid shot, right? They have not, hopefully they haven’t, had covid. You want them protected before they get exposed, so that’s a really crucial gap in the health system that I think people don’t appreciate, because a lot of people are just thinking now, well, oh everybody’s had covid or had two or three shots, and this is a particularly vulnerable population that’s having trouble finding vaccines right now.

Rovner: Yet, I mean, considering it’s very early in the respiratory disease season, there seems to be a lot of covid going around right now, which I suspect is why there’s such a demand, at least among the people who are most concerned about getting the vaccine, for getting the vaccine. It feels like it did at the beginning, when it’s like suddenly there’s this big rush of people at the beginning who want it. Eventually, there’ll probably be more vaccine than is needed, but for right now, I mean, I’m seeing lots and lots and lots of stories and anecdotes and everything about people, as you say, making appointments, showing up, and having the pharmacy saying, “Oops, we didn’t get our supply.”

Karlin-Smith: I mean, there’s been this sort of hope and narrative that covid, is it going to become seasonal in the way we think of flu, where there’s generally a more clear, defined season? You can kind of make a good guess that the best time to get your flu shot is in October and know you’ll be protected all flu season. As much as we hope that’s the case with covid and eventually becomes the case, that’s really not true now. We’ve still had — again, they’re relative maybe compared to some other surges, but we’ve had surges pretty much every summer, so it’s been really difficult. A lot of parents, I think, wanted to get their kids vaccinated before they went back into school and classrooms. If you have little kids, you just know, it becomes a big germ bath, and everybody gets sick.

Rovner: And parents wanted to get themselves vaccinated before their kids went back to school and brought home those germs.

Karlin-Smith: Right, so the timing of it, again, hasn’t been great, for that regard, but I think it is just this difficulty with covid, in that we haven’t had that same predictability of when you might get it during the year, so it is a lot harder to protect yourself.

Rovner: We’ll see how that sorts itself out. Well, keeping with our continuing theme of things that are not going great, let’s talk about the Medicaid unwinding. Our podcast colleague, Amy Goldstein, has a troubling story in The Washington Post about how people whose Medicaid coverage is being canceled but who are eligible for subsidized plans under the Affordable Care Act are in fact having trouble making that transition. Sometimes people are falling through the cracks because states don’t have enough information to know what they’re eligible for or they don’t have the staff to process the transitions.

Sometimes in states like California, people fail to follow up, even when they are given all the information they need. Is this just the inevitable fallout of trying to redetermine the complicated eligibility rules for more than 90 million Americans in a single year, or could something more have been done? I mean, how many times did I hear them say, “It’s OK if you get dropped from Medicaid. We’re going to get you onto your Affordable Care Act plan that’s fully subsidized.” That doesn’t seem to be happening in every state.

Karlin-Smith: I mean, it seemed like, from Amy’s reporting, that there are some states that have connected their Medicaid systems and their exchange sign-ups really closely, and those are going better, but —

Rovner: California, yeah.

Karlin-Smith: Right. Yeah, she mentioned the Medi-Cal system, but then even these states that she calls out as the success stories still have fairly low transition rates. It’s just one of the many examples of our country of having such separate systems and very different bureaucratic processes for sign-up that really hurt people. As we’ve seen with this Medicaid process, a lot of it is just about these paperwork, if you will, call them burdens, that really get people to lose their health insurance and not be covered, so that’s really —

Rovner: I taped a podcast earlier this week aimed at young adults, teaching them how to quote-unquote “adult,” talking about health insurance and open enrollment and how to get signed up. After the Affordable Care Act, there are so many more protections than there were before, and yet it is still unbelievably complicated to try to explain to somebody who’s facing this for the first time. There are just so many possibilities and so many ways. There’s lots of ways to get health insurance, and there’s even more ways to fall through the cracks and not get health insurance. It seems that the more we try to put band-aids on the system, the more confusing it gets to everybody. Maybe I’ve been doing this for too long.

All right, well, finally this week, also in not great news, The Washington Post has published a giant project on declining life expectancy in the United States. It turns out the problem is a lot more complicated than just covid and drug overdoses. Those are the things we’ve been hearing about for a while, although those are indeed a piece of it. Lauren, you were part of the team that put this project together. Tell us the real reasons why Americans aren’t living as long as they used to and aren’t living as long as people in other countries.

Weber: Our team found that income had a big, big part to do with that. The poorest counties in the U.S., compared to the richest counties of the U.S., are doing 6 times worse than they were 40-some years ago, when it comes to life expectancy. The income gap has increased, obviously, but not nearly as much as the life expectancy gap has increased. I think that says something about the U.S.

In general, I mean, as you mentioned, a lot of people consider opioids, deaths of despair, to be what’s killing Americans across the country, but they’re really overlooking chronic illness. Our reporting, my reporting with Dan Diamond and Dan Keating and I, we looked at how the politics also play into life expectancy. What we found is that public health initiatives and public health laws, like tobacco laws for tobacco taxes, seat belt laws, and investing in public health, does have a direct correlation to longevity of life.

State politics and state policies and lawmaker decisions can shave years off of Americans’ lives. What we found in our reporting and in our analysis is that that was happening in red states, particularly those in the South and the Midwest. What we did is we compared three counties that ring Lake Erie: Ashtabula, Ohio; Erie County, Pennsylvania; and Chautauqua, New York. These three counties, they’re all pretty down on their luck. Industrially, the jobs have gone. None of these counties is a success story in health, but they’re all across state lines. It’s just very vivid to see how the different tobacco taxes, seat belt laws have resulted in totally different outcomes when it comes to life expectancy. And you could see, even reflected in these counties, the covid death rates tracked the state investments in public health and the state infrastructure in public health.

So, you know, something that our series looks to do is explain why a state like Ohio has the same life expectancy as Slovakia. One in 5 Ohioans won’t make it to 65. That’s a pretty wild stat. I think a lot of people in this country don’t realize that life expectancy, some of these preventable diseases are preventable.

Rovner: Yeah, I mean, I was really taken by the comparison of tobacco taxes. Where the tobacco taxes were the lowest, which I guess was Ohio, the rate of smoking and, surprise, smoking-related diseases was much higher, and therefore life expectancy was much lower. I noticed The Washington Post had yet another story this week, not quite the same, but how Great Britain and some other countries in Europe are trying to effectively ban smoking, not by banning it outright, which will just make it a black market, but by doing it year by year so that the current cohort of people who smoke will be able to continue but as younger people get older, it will become illegal, until eventually, when everybody dies off, smoking will be basically banned in Great Britain. Somehow, I can’t see that ever happening here, but it’s certainly a public health initiative that’s pretty bold.

Weber: It’s pretty bold. It would not happen here. I mean, look, one of the legislators that we talked to in Ohio, who had stopped a lot of the tobacco taxes — Bill Seitz, House floor majority leader for Ohio — he smoked for 50 years before he quit this summer, actually, because he got kidney cancer and lost a kidney, so he stopped smoking. But what he said to us, when we asked him how he felt about having blocked all these tobacco taxes and if he planned to keep doing that, he said, “Well, just because I quit smoking doesn’t mean I’m going to become a smoke Nazi now. People have the liberty and the right to smoke.”

I mean, a lot of what our reporting came down to is this concept of personal freedom and liberty versus public health, looking at the community as a whole. It was really fascinating to dig into some of the interesting dynamics in Ohio, especially because Gov. DeWine, who is a Republican, has been more bold on public health and has tried to push the legislature to consider more of these initiatives, in part because he has a personal story. His daughter died over 30 years ago in a car accident, and so he’s been very aggressive in especially car safety, but really in a lot of public health initiatives because, as he told us, that kind of death clarifies things for you when it comes to tipping the scales for people’s loved ones. We’ll see that dynamic play out across the U.S., but it is fascinating to examine how tobacco is very much with us. I mean, 20% of Ohioans smoke. I mean, this is not — I think a lot of people consider opioids and these things to still be the new thing to focus on, but tobacco cessation is still very much a fight happening across the country.

Rovner: It’s interesting to me that it’s not just — I mean, the shorthand is red versus blue, but it’s not really just red versus blue because, as you point out, Gov. DeWine’s a Republican, fairly conservative Republican. Before him, Gov. Kasich, also fairly conservative, or used to be considered a fairly conservative Republican. I mean, it’s really about being pro-public health or anti-public health. It gets us back to PEPFAR, right? Victoria, in the early 2000s, Republicans were very pro-public health. Newt Gingrich led the charge to double the funding at the National Institutes of Health. And these days, what you have are very conservative Republicans who apparently don’t believe in public health or in science.

Knight: I was going to say, I think what this series does so well is it emphasizes that so much of our challenges in the U.S. with health is not about the medical system of health; it is the things that we sometimes don’t even think about as health care, not even just public health, but the economic practices, our labor practices, our housing, our food system, that actually these are some of the main things that end up impacting who is living longer and healthier, and so forth. I actually did an interview with an outgoing pharma lobbyist this week, and she was saying — she mentioned chronic diseases, which was a big part of Lauren’s story, and saying, “We actually have more problems with chronic disease now than we did when I started, even though now we have all these cheap, generic medicines for, you know, we have statins and blood thinners and a lot of diabetes medicines that are generic and all these things.” Yes, we have problems with people accessing this medical system and affording it in the U.S., and that’s a big thing, but a lot of this is starting way before you get to the hospital and the doctor’s office, and the U.S. has all these amazing technologies, but we’re failing on these much more basic solutions to keeping people healthy and alive.

Rovner: It’s also not just physical access to health care. I mean, Ohio’s the home of the Cleveland Clinic, for heaven’s sakes, one of the major health care providers in the country. Many parts of Ohio are pretty rural, but it’s not like people have to drive hundreds of miles to get health care. I mean, this whole public health issue is not simply a matter of people can’t get to the doctor, the way we have concerns about that in places like Texas and the Far West. I mean, it really is just these everyday things, whether you wear your seat belt, whether you start smoking. I think it kind of shined a light on actual public health and the importance of public health to life expectancy.

Knight: I think, also, just going back to the politics of it for one second, I mean, I think the result of some of this is just the increased polarization between the two parties, and Republicans also, I think, were really mad about some decisions made during covid, and so we’re also seeing that where they’re, at the state and local level, wanting to strip money from public health departments, as Lauren has reported on at KFF Health News and the Post, and then that’s also, you’re seeing that in Congress as well, now, where they’re not wanting — they’re angry at some of these decisions made, and they want to strip funding from the CDC. They want to strip it from the NIH. We don’t know how the appropriations bills are going to end up, but it’s definitely something that they’re talking about in the House, at least, which is in Republican control.

Karlin-Smith: Everybody I talk to about anti-vaccine sentiment, they say once these sort of sentiments become aligned with your political identity, it makes it so much harder to shift course, so again, this idea that there’s political alignment around how we think about public health is just seen as so problematic because of how people see their identities. It becomes much harder to change people’s opinions when it’s tied into your politics like that.

Weber: Yeah, and I just wanted to highlight, so one of the folks I met in Ashtabula, Ohio, was Mike Czup, who was a funeral home owner, who was 52 years old. What he told me is that a quarter of the people he buries are younger than him. I mean, that’s just a wild statistic; a quarter of the people he buries are younger than him. Honestly, he wasn’t even surprised. I mean, that was just the norm. That was the way of life. I think that’s what this series shines a light on is that people across the U.S. just assume that lung cancer, heart attack, stroke — that’s just what happens. But that’s not the case across the world. It doesn’t have to be the case, and in certain states it’s not the case. California has much better life expectancy than Ohio does, despite them both being on a very similar trajectory in the ’90s. It’s pretty stark findings.

Rovner: Yeah, it’s a really, really, really good series. We will link to it on the podcast page. All right, well, that is this week’s news. Now we will play my interview with Sam Shem, physician, author, and playwright, and then we will come back and do our extra credits for this week.

I am honored to welcome to the podcast Samuel Shem — not his real name, by the way. Dr. Shem shook up the world of medical training back in 1978, when he wrote a groundbreaking novel about his first year as a medical resident, called “House of God.” It was funny and sad and painted an altogether not very pretty picture of medical training in Boston at some of the nation’s most esteemed hospitals and medical schools.

He has spent most of the past five decades crusading, if I can use that verb, to “put the human back in health care.” Fun fact: My mom interviewed him for The Washington Post in 1985. Now Shem has a new novel called “Our Hospital.” It paints a funny and sad picture of the state of medical practice and the state of the American patient in the era of covid. It’s actually the fourth and final volume of his irreverent evaluation of the U.S. health care system. I spoke to Dr. Shem from his home office in upstate New York and started by asking him why he wanted to write a novel about covid.

Samuel Shem: I don’t know how much longer I’m going to be able to write. Nobody does, really. What I did is I said, “Someone has to write about what’s going on in a hospital, and we have to now talk about nurses.” I haven’t put them at the forefront until now, because they have done so incredibly much. I’m taking all the other books, the “House of God” books and others, and I’m bringing them all together like a family. I don’t have a big family, so I’m absolutely doing this with care and vehemence and also a lot of skill in shifting gears, so go read it.

Rovner: I sort of approached this with trepidation, because who wants to read a novel about covid? But, in the end, it’s a pretty optimistic book about what the future of medicine can be, which, forgive me, feels odd for a novel about covid and the possible end of democracy. Are you really that optimistic about America’s ability to cure what ails our health care system, or did you just get tired of writing depressing literature about the health care system?

Shem: Well, I am a crazy optimist, because I grew up in a time, like your mother, when things changed. They changed because we got out there and we were in the streets, and it changed. I was partly in the USA and partly on a Rhodes in Oxford. I think we just have to get together and try to stay together. What this book does: The doctors and the nurses come together, and that is an immense force. We can do this. That’s what I think. The best person in the book, that I have ever written, in some ways, were the women nurses.

Rovner: The heroes of this book are all women, doctors and nurses. You’ve obviously been roundly criticized for your portrayal of women in the original “House of God.” Is it just that you wanted to make it up, or do you really think that women are the future of fixing health care?

Shem: The future of anything. My wife, Janet Surrey, and I, we worked a lot a long time ago on male-female relationships. Women are a beacon of what men could do in medicine. You’ve got to have some kind of group that can get what we need.

Rovner: You’ve watched the evolution of medical practice in America for half a century now, the amazing advances and depressing depersonalization and corporatization. Which one is winning, at this point?

Shem: Well, both. The money — it’s hard to take money from people with so much money. It’s crazy. It’s insane. There are other models, in Australia and all that stuff. What’s happening, unfortunately, is that doctors are running. They’re saying, “I don’t want to do this anymore.” Sooner or later, with some giant people talking about it — doctors and nurses — it can’t go on. It really can’t go on.

Some of the things that I’m hearing: Doctors, they’re saying, “Well, in two years, I’m gone. I can’t do this anymore.” But we can’t do it alone. I can’t say it so more and more. I mean, I know a lot about this in various different jobs I’ve had. It’s got to be with doctors and nurses.

Rovner: What ties a lot of your writing together is the notion of burnout for medical professionals, which may be, as you mentioned, one of the biggest problems right now in U.S. health care. If you could wave a magic wand, what’s one thing that you could do that could help medical professionals, both doctors and nurses and everybody else who works in medicine, love their work again?

Shem: It’s terrible. Young doctors, they don’t know what to do, you know?

Rovner: I mean, do you worry that people won’t want to go into medicine because it’s now viewed as doctors particularly don’t have the community esteem that they used to? Health workers are in danger sometimes in their own workplaces. It’s not a great situation.

Shem: Yes, I think we became horrified when we went on our first medical school times that we were in the hospital. Right when the kids go into the hospital, it’s obvious. It’s really obvious. They’re seeing the house staff spending 80% in front of a computer to bill, so they can’t help but do it.

The problem is you’ve spent so much money and so much time. What the hell should I do? But there are people who are really paying attention to this. I don’t really do it in person too much, but in everything I say these kinds of things, so I think it might help.

Rovner: You’ve now influenced several generations of medical practitioners. Is there a single lesson that you hope you have imparted on all of them?

Shem: Yes. This is what I start my addresses with. I call it staying human in medicine, the danger of isolation and the healing power of good connection. It’s not I-you; it’s the connection that goes after each of them. What’s good connection? Mutual connection. If it’s not mutual, it’s not that good. If you let me, maybe I could read the very end. Is that all right?

Rovner: Yes, please.

Shem: “I’m with you totally. Almost everyone in medicine is hurting, doctors, nurses, and all the others, working in the money-driven hell realms of American care. We’re all suffering terribly. Covid has lit it all up for all to see. The resists to our bodies, minds, and spirits are profound, killing ourselves, acting normal, the poor and people of color dying in droves.”

He paused, scanning the trees for the fat man. Nothing. He went on, “We do miracles every day, we doctors, but we haven’t been able to get a place to work in body and spirit. One in 5 health care workers have quit. Many of us died. At the start of covid, we did the most important thing for us and our patients. We stuck together.” We did. It’s a model, right? But not lasting into the daytime. Hatred and money killed it. I have confidence. We’re no dopes, we docs.

I just think people like you, and people who pay attention, it’s inevitable. I do think it’s inevitable that we’re going to get better stuff. It really will.

Rovner: And get some of the greed out of medicine?

Shem: Yes, because it’s going to crash. You can’t go on like this. Nobody can go on like this. I think so. I really do. You know what? It doesn’t take much. How did we get rid of the presidents in the ’60s? Basically, people who are into power are scared about losing the power, you know, all of the people who protect them and all that stuff.

Rovner: Well, thank you very much, Dr. Samuel Shem. Thank you for joining us.

Shem: OK.

Rovner: We are back, and it’s time for our extra credit segment. That’s when we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Victoria, why don’t you go first this week?

Knight: Sure thing. My extra credit is from KFF Health News, and it is called “Feds Rein In Use of Predictive Software That Limits Care for Medicare Advantage Patients,” by Susan Jaffe. This basically was looking at how Medicare Advantage plans, which are plans that private health insurers run for people that are of Medicare age — they’re basically running their health insurance programs — it’s talking about how these MA plans are using predictive software systems to make coverage decisions for patients, and so they’re looking at other patients that may have similar illnesses and what their treatments were and how long it took to treat them and then, based on that, deciding when they should cut off coverage for patients.

Rovner: That doesn’t always work very well, does it?

Knight: No, it does not. This story chronicles how this has happened to several patients, who were not ready to finish having whatever their treatment, illness — the person profiled in the story still couldn’t walk well. She had a colostomy bag, and they were going to cut off her coverage, and so she had to keep paying for it, almost $10,000, just because this software said, “Oh, you should be done by now, based on other people’s cases.”

But there is some good news, in that there is a Biden administration regulation that will be put into effect in January, and that’s going to do a better job of making sure these plans take the individual patient’s circumstances into account when making these coverage decisions, but we’ll see how that actually plays out. It takes effect in January.

Rovner: Really good story.

Knight: Yes, it’s a very good story, yes.

Rovner: Sarah.

Karlin-Smith: I looked at a Wall Street Journal story, “Children Are Dying in Ill-Prepared Emergency Rooms Across America,” by Liz Essley Whyte and Melanie Evans. It’s a piece that talks about how so many hospitals are not properly equipped to treat pediatric patients when they go to the ER. It’s a failure of regulations, standards, and so forth. They really document how this has been a long-known problem, going back 20-plus years, and things have not changed. This may mean that you might not — even if you have a hospital near you — you might not have a hospital that really can successfully save your child’s life. That is because children are not little adults. There’s different — you really have to be trained to know how to deal with them in emergencies and also even just have the equipment, the specialized sized equipment and so forth, to deal with them in emergencies.

It’s a really sad story. It gets into some of the economic reasons why these hospitals are not prepared. But again, it gives you a sense of a connection to Lauren’s piece, and the Post’s big piece, which is that we have a lot of tools and technology we’ve developed in this country, but if it’s not available to the people when and where they need it, lives don’t get saved.

Rovner: This piece really shook me, because I assume that — I mean, kids are the ones who seem to end up in the emergency room most often. They’re the ones who have accidents and fall off their bikes and get sick in the middle of the night and all those other things, and yet so many emergency rooms are not prepared for them. Anyway, Lauren.

Weber: I picked a piece that is particularly alarming if you know anyone that has a CPAP [continuous positive airway pressure] machine, but it’s titled “Philips Kept Complaints About Dangerous Breathing Machines Secret While Company Profits Soared.” It’s a collaboration between ProPublica, the Pittsburgh Post-Gazette, and Northwestern, and I believe a Netherlands paper, as well. It’s a very disturbing investigation about how Philips knew, had been getting a ton of complaints, that when they rejiggered some of their breathing machines, the foam was disintegrating and chunks of the black material was then getting into people who were using the breathing machine’s lungs and, from the court cases, it appears, causing them potential cancers and adverse health effects.

The FDA, I guess, from reading the piece, requires that companies report complaints, but according to this, Philips did not tell the FDA about all these complaints. It’s a really alarming story, because you’re like, how many other companies are not telling anyone about the complaints they’re receiving? Just really well-done investigation. It appears to be based on court documents, so hats off to them, but very disturbing, again, if you have anyone that has a CPAP or breathing machine they need to sleep, which is vital for everyone. If you have an understanding about how those work, you are hooked up to it, so you are forced to breathe through it, so it really disturbed me that that could be causing you adverse health effects down the road.

Rovner: Yeah, I mean, this is obviously not the first story we’ve seen on this, but it’s certainly one of the most detailed stories that we have seen about this. Well, my story this week is from The Atlantic, by Ron Brownstein. It’s called “Virginia Could Determine the Future of the GOP’s Abortion Policy.” I think he’s right. Virginia votes in odd-numbered years, remember. While Republican Gov. Glenn Youngkin isn’t on the ballot next month, the entire state legislature, which has teetered between Republican and Democratic control over the past several elections, is facing the voters.

Democrats in Virginia, as elsewhere, are charging that if Republicans take back the majority in the State House and Senate, they will restrict abortion, which is likely true, but Republicans say they won’t, quote, “ban abortion,” per se, but would rather set a limit of 15 weeks, with exceptions for rape, incest, and the life of the pregnant person. If voters in a purple state like Virginia see that as a compromise position, rather than a ban, it could set the stage for Republicans elsewhere to fight the current Democratic advantage on the abortion issue. We will see, in about a month, how that all shakes out.

OK, that is our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review. That helps other people find us, too. Special thanks, as always, to our amazing engineer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can still find me at X @jrovner or @julierovner at Bluesky and Threads. Sarah?

Karlin-Smith: I’m @SarahKarlin or @sarahkarlin-smith.

Rovner: Lauren.

Weber: I’m @LaurenWeberHP, for health policy.

Rovner: Victoria.

Knight: I’m @victoriaregisk [on X and Threads].

Rovner: We will be back in your feed next week. Until then, be healthy.

Credits

Francis Ying
Audio producer

Emmarie Huetteman
Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

The Host

Julie Rovner
KFF Health News

@jrovner

Read Julie's stories.

Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

Federal officials have instructed at least 30 states to reinstate Medicaid and Children’s Health Insurance Program coverage for half a million people, including children, after an errant computer program wrongly determined they were no longer eligible. It’s just the latest hiccup in the yearlong effort to redetermine the eligibility of beneficiaries now that the program’s pandemic-era expansion has expired.

Meanwhile, the federal government is on the verge of a shutdown, as a small band of House Republicans resists even a short-term spending measure to keep the lights on starting Oct. 1. Most of the largest federal health programs, including Medicare, have other sources of funding and would not be dramatically impacted — at least at first. But nearly half of all employees at the Department of Health and Human Services would be furloughed, compromising how just about everything runs there.

This week’s panelists are Julie Rovner of KFF Health News, Rachel Roubein of The Washington Post, Sandhya Raman of CQ Roll Call, and Sarah Karlin-Smith of Pink Sheet.

Panelists

Sarah Karlin-Smith
Pink Sheet

@SarahKarlin

Read Sarah's stories

Sandhya Raman
CQ Roll Call

@SandhyaWrites

Read Sandhya's stories

Rachel Roubein
The Washington Post

@rachel_roubein

Read Rachel's stories

Among the takeaways from this week’s episode:

• Officials in North Carolina announced the state will expand its Medicaid program starting on Dec. 1, granting thousands of low-income residents access to health coverage. With North Carolina’s change, just 10 states remain that have not expanded the program — yet, considering those states have resisted even as the federal government has offered pandemic-era and other incentives, it is unlikely more will follow for the foreseeable future.
• The federal government revealed that nearly half a million individuals — including children — in at least 30 states were wrongly stripped of their health coverage under the Medicaid unwinding. The announcement emphasizes the tight-lipped approach state and federal officials have taken to discussing the in-progress effort, though some Democrats in Congress have not been so hesitant to criticize.
• The White House is pointing to the possible effects of a government shutdown on health programs, including problems enrolling new patients in clinical trials at the National Institutes of Health and conducting food safety inspections at the FDA.
• Americans are grappling with an uptick in covid cases, as the Biden administration announced a new round of free test kits available by mail. But trouble accessing the updated vaccine and questions about masking are illuminating the challenges of responding in the absence of a more organized government effort.
• And the Biden administration is angling to address health costs at the executive level. The White House took its first step last week toward banning medical debt from credit scores, as the Federal Trade Commission filed a lawsuit to target private equity’s involvement in health care.
• Plus, the White House announced the creation of its first Office of Gun Violence Prevention, headed by Vice President Kamala Harris.

Also this week, Rovner interviews KFF Health News’ Samantha Liss, who reported and wrote the latest KFF Health News-NPR “Bill of the Month,” about a hospital bill that followed a deceased patient’s family for more than a year. If you have an outrageous or infuriating medical bill you’d like to send us, you can do that here.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week they think you should read, too:

Julie Rovner: JAMA Internal Medicine’s “Comparison of Hospital Online Price and Telephone Price for Shoppable Services,” by Merina Thomas, James Flaherty, Jiefei Wang, et al.

Sarah Karlin-Smith: The Los Angeles Times’ “California Workers Who Cut Countertops Are Dying of an Incurable Disease,” by Emily Alpert Reyes and Cindy Carcamo.

Rachel Roubein: KFF Health News’ “A Decades-Long Drop in Teen Births Is Slowing, and Advocates Worry a Reversal Is Coming,” by Catherine Sweeney.

Sandhya Raman: NPR’s “1 in 4 Inmate Deaths Happen in the Same Federal Prison. Why?” by Meg Anderson.

Also mentioned in this week’s episode:

• KFF Health News’ “Diagnosis: Debt,” by Noam N. Levey and KFF Health News, NPR, and CBS staff.
• The New York Times’ “In Hospitals, Viruses Are Everywhere. Masks Are Not,” by Apoorva Mandavilli.

click to open the transcript

Transcript: More Medicaid Messiness

KFF Health News’ ‘What the Health?’Episode Title: More Medicaid MessinessEpisode Number: 316Published: Sept. 27, 2023

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]

Julie Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News. And I’m joined by some of the best and smartest health reporters in Washington. We’re taping early this week, on Wednesday, Sept. 27, at 10 a.m. As always, news happens fast and things might’ve changed by the time you hear this, so here we go.

We are joined today via video conference by Rachel Roubein of The Washington Post.

Rachel Roubein: Good morning. Thanks for having me.

Rovner: Sandhya Raman of CQ Roll Call.

Sandhya Raman: Good morning.

Rovner: And Sarah Karlin-Smith of the Pink Sheet.

Sarah Karlin-Smith: Hi, everybody.

Rovner: Later in this episode we’ll have my KFF Health News-NPR “Bill of the Month” interview with Samantha Liss. This month’s bill is literally one that followed a patient to his family after his death. But first, the news. I want to start with Medicaid this week. North Carolina, which approved but didn’t fund its Medicaid expansion earlier this year, approved a budget this week that will launch the expansion starting Dec. 1. That leaves just 10 states that have still not expanded the program to, mostly, low-income adults, since the Affordable Care Act made it possible in, checks notes, 2014. Any other holdout states on the horizon? Florida is a possibility, right, Rachel?

Roubein: Yes. There’s only technically three states that can do ballot measures. Now North Carolina, I believe, was the first state to actually pass through the legislature since Virginia in 2018. A lot of the most recent states, seven conservative-leaning states, instead pursued the ballot measure path. In Florida, advocates have been eyeing a 2026 ballot measure. But the one issue in Florida is that they need a 60% threshold to pass any constitutional amendment, so that is pretty, pretty high and would take a lot of voter support.

Rovner: And they would need a constitutional amendment to expand Medicaid?

Roubein: A lot of the states have been going the constitutional amendment route in terms of Medicaid in recent years. Because what they found was some legislatures would come back and try and change it, but if it’s a constitutional amendment, they weren’t able to do that. But a lot of the holdout states don’t have ballot measure processes, where they could do this — like Alabama, Georgia, etc.

Raman: Kind of just echoing Rachel that this one has been interesting just because it had come through the legislature. And even with North Carolina, it’s been something that we’ve been eyeing for a few years, and that they’d gone a little bit of the way, a little bit of the way a few times. And it was kind of the kind of gettable one within the ones that hadn’t expanded. And the ones we have left, there’s just really not been much progress at all.

Rovner: I would say North Carolina, like Virginia, had a Democratic governor that ran on this and a Republican legislature, or a largely Republican legislature, hence the continuing standoff. It took both states a long time to get to where they had been trying to go. And you’re saying the rest of the states are not split like that?

Raman: Yeah, I think it’ll be a much more difficult hill to climb, especially when, in the past, we had more incentives to expand with some of the previous covid relief laws, and they still didn’t bite. So it’s going to be more difficult to get those.

Rovner: No one’s holding their breath for Texas to expand. Anyway, while North Carolina will soon start adding people to its Medicaid rolls, the rest of the states are shedding enrollees who gained coverage during the pandemic but may no longer be eligible. And that unwinding has been bumpy to say the least. The latest bump came last week when the Department of Health and Human Services revealed that more than half a million people, mostly children, had their coverage wrongly terminated by as many as 30 states. It seems a computer program failed to note that even if a parent’s income was now too high to qualify, that same income could still leave their children eligible. Yet the entire family was being kicked off because of the way the structure of the program worked. I think the big question here is not that this happened, but that it wasn’t noticed sooner. It should have been obvious — children’s eligibility for Medicaid has been higher than adults since at least the 1980s. This unwinding has been going on since this spring. How is this only being discovered now? It’s September. It’s the end of September.

Roubein: Yeah. I mean, this was something advocates who have been closely watching this have been ringing the alarm bells for a while, and then it took time. CMS [the Centers for Medicare & Medicaid Services] had put something out, I believe it was roughly two weeks before they actually then had the roughly half a million children regain coverage — they had put out a, “OK, well, we’re exploring which states.” And lots of reporters were like, “OK, well which state is this an issue?” So yeah, the process seemed like it took some time here.

Rovner: I know CMS has been super careful. I mean, I think they’re trying not to politicize this, because they’ve been very careful not to name states, and in many cases who they know have been wrongly dropping people. I guess they’re trying to keep it as apolitical as possible, but I think there are now some advocates who worry that maybe CMS is being a little too cautious.

Karlin-Smith: Yeah, I think from the other side too, if you’ve talked to state officials, they’re also trying to be really cautious and not criticize CMS. So it seems like both sides are not wanting to go there. But I mean some Democrats in Congress have been critical of how the effort has gone.

Rovner: Yeah. And of course, if the government shuts down, as seems likely at the end of this week, that’s not going to make this whole process any easier, right? The states will still get to do what the states are doing. Their shutdown efforts, or their re-qualification efforts, are not federally funded, but the people at CMS are.

Karlin-Smith: Yeah, that’ll just throw another thorn in this as we’re getting very, very likely headed towards a shutdown at this point on the 27th. So I think that’ll be another barrier for them regardless. And I mean, most CMS money isn’t even affected by the yearly budget anyways because it’s mandatory funding, but that’ll be a barrier for sure.

Rovner: So, speaking of the government shutdown, it still seems more likely than not that Congress will fail to pass either any of the 12 regular spending bills or a temporary measure to keep the lights on when the fiscal year ends at midnight Sunday. That would lead to the biggest federal shutdown since 2013 when, fun fact, the shutdown was an attempt to delay the rollout of the Affordable Care Act. What happens to health programs if the government closes? It’s kind of a big confusing mess, isn’t it?

Roubein: Yeah, well, what we know that would definitely continue and in the short term is Medicare and Medicaid, Obamacare’s federal insurance marketplace. Medicaid has funding for at least the next three months, and there’s research developing vaccines and therapeutics that HHS, they put out their kind of contingency “What happens if there’s a shutdown?” plan. But there’s some things that the White House and others are kind of trying to point to that would be impacted, like the National Institutes of Health may not be able to enroll new patients in clinical trials, the FDA may need to delay some food safety inspections, etc.

Rovner: Sarah, I actually forgot because, also fun fact, the FDA is not funded through the rest of the spending bill that includes the Department of Health and Human Services. It’s funded through the agriculture bill. So even though HHS wasn’t part of the last shutdown in 2018 and 2019, because the HHS funding bill had already gone through, the FDA was sort of involved, right?

Karlin-Smith: Right. So FDA is lumped with the USDA, the Agriculture Department, for the purposes of congressional funding, which is always fun for a health reporter who has to follow both of those bills. But FDA is always kind of a unique one with shutdown, because so much of their funding now is user fees, particularly for specific sections. So the tobacco part of FDA is almost 100% funded by user fees, so they’re not really impacted by a shutdown. Similarly, a lot of drug, medical device applications, and so forth also are totally funded by user fees, so their reviews keep going. That said, the way user fees are, they’re really designated to specific activities.

So, where there isn’t user fees and it’s not considered a critical kind of public health threat, things do shut down, like Rachel mentioned: a lot of food work and inspections, and even on the drug and medical device side, some activities that are related that you might think would continue don’t get funded.

Rovner: Sandhya, is there any possibility that this won’t happen? And that if it does happen, that it will get resolved anytime soon?

Raman: At this point, I don’t think that we can navigate it. So last night, the Senate put out their bipartisan proposal for a continuing resolution that you would attach as an amendment to the FAA, the Federal Aviation [Administration] reauthorization. And so that would temporarily extend a lot of the health programs through Nov. 17. The issue is that it’s not something that if they are able to pass that this week, they’d still have to go to the House. And the House has been pretty adamant that they want their own plan and that the CR that they were interested in had a lot more immigration measures, and things there.

And the House right now has been busy attempting to pass this week four of the 12 appropriations bills. And even if they finished the four that they did, that they have on their plate, that would still mean going to the Senate. And Biden has said he would veto those, and it’s still not the 12. So at this point, it is almost impossible for us to not at least see something short-term. But whether or not that’s long-term is I think a question mark in all the folks that I have been talking to about this right now.

Rovner: Yeah, we will know soon enough what’s going to happen. Well, meanwhile, because there’s not enough already going on, covid is back. Well, that depends how you define back. But there’s a lot more covid going around than there was, enough so that the federal government has announced a new round of free tests by mail. And there’s an updated covid vaccine — I think we’re not supposed to call it a booster — but its rollout has been bumpy. And this time it’s not the government’s fault. That’s because this year the vaccine is being distributed and paid for by mostly private insurance. And while lots of people probably won’t bother to get vaccinated this fall, the people who do want the vaccine are having trouble getting it. What’s happening? And how were insurers and providers not ready for this? We’d been hearing the updated vaccines would be available in mid-September for months, Sarah. I mean they really literally weren’t ready.

Karlin-Smith: Yeah. I mean, it’s not really clear why they weren’t ready, other than perhaps they felt they didn’t need to be, to some degree. I mean, normally, I know I was reading actually because we’ve also recently gotten RSV [respiratory syncytial virus] vaccine approvals — normally they actually have almost like a year, I think, to kind of add vaccines to plans and schedules and so forth, and pandemic covid-related laws really shortened the time for covid. So they should have been prepared and ready. They knew this was coming. And people are going to pharmacies, or going to a doctor’s appointment, and they’re being told, “Well, we can give you the vaccine, but your insurance plan isn’t set up to cover it yet, even though technically you should be.” There seems like there’s also been lots of distribution issues where again, people are going to sites where they booked appointments, and they’re saying, “Oh, actually we ran out.” They’re trying another site. They’ve run out.

So, it’s sort of giving people a sense of the difference of what happens when sort of the government shepherds an effort and everybody — things are a bit simplified, because you don’t have to think about which site does your insurance cover. There is a program for people who don’t have insurance now who can get the vaccine for free, but again, you’re more limited in where you can go. There’s not these big free clinics; that’s really impacting childhood vaccinations, because, again, a lot of children can’t get vaccinated at the pharmacy. So I think people are being reminded of what normal looked like pre-covid, and they’re realizing maybe we didn’t like this so much after all.

Rovner: Yeah, it’s not so efficient either. All the people who said, “Oh, the private sector could do this so much more efficiently than the government.” And it’s like, we’re ending up with pretty much the same issues, which is the people who really want the vaccine are chasing around and not finding it. And I know HHS Secretary Becerra went and had this event at a D.C. pharmacy where he was going to get his vaccine. And I think the event was intended to encourage people to go get vaccinated, but it happened right at the time when the big front surge of people who wanted to get vaccinated couldn’t find the vaccine.

Karlin-Smith: I think that’s a big concern because we’ve had such low uptake of booster or additional covid shots over the past couple of years. So the people who are sort of the most go-getters, the ones who really want the shots, are having trouble and feeling a bit defeated. What does that mean for the people that are less motivated to get it, who may not make a second or third attempt if it’s not easy? We sort of know, and I think public health folks kind of beat the drum, that sort of just meeting people where they are, making it easy, easy, easy, is really how you get these things done. So it’s hard to see how we can improve uptake this year when it’s become more complicated, which I think is going to be a big problem moving forward.

Rovner: Yeah. Right. And clearly these are issues that will be ironed out probably in the next couple of weeks. But I think what people are going to remember, who are less motivated to go get their vaccines, is, “Oh my God, these people I know tried to get it and it took them weeks. And they showed up for their appointment and they couldn’t get it.” And it’s like, “It was just too much trouble and I can’t deal with it.” And there’s also, I think you mentioned that there’s an issue with kids who are too young to get the vaccine too, right?

Karlin-Smith: Right. Still, I think people forget that you have to be 6 months to get the vaccine. If you’re under 3, you basically cannot get it in a pharmacy, so you have to get it in a doctor’s office. But a lot of people are reporting online their doctor’s office sort of stopped providing covid vaccines. So they’re having trouble just finding where to go. It seems like the distribution of shots for younger children has also been a bit slower as well. And again, this is a population where just even primary series uptake has been a problem. And people are in this weird gap now where, if you can’t get access to the new covid vaccine but your kid is eligible, the old vaccine isn’t available.

So you’re sort of in this gap where your kid might not have had any opportunity yet to get a covid vaccine, and there’s nothing for them. I think we forget sometimes that there are lots of groups of people that are still very vulnerable to this virus — including newborn babies who haven’t been exposed at all, and haven’t gotten a chance to get vaccinated.

Rovner: Yeah. So this is obviously still something that we need to continue to look at. Well, meanwhile, mask mandates are making a comeback, albeit a very small one. And they are not going over well. I’ve personally been wearing a mask lately because I’m traveling later this week and next, and don’t want to get sick, at least not in advance. But masks are, if anything, even more controversial and political than they were during the height of the pandemic. Does public health have any ideas that could help reverse that trend? Or are there any other things we could do? I’ve seen some plaintiff complaints that we’ve not done enough about ventilation. That could be something where it could help, even if people won’t or don’t want to wear masks. I mean, I’m surprised that vaccination is still pretty much our only defense.

Karlin-Smith: I think with masks, one thing that’s made it hard for different parts of the health system and lower-level kind of state public health departments to deal with masks is that the CDC [Centers for Disease Control and Prevention] recommendations around masking are pretty loose at this point. So The New York Times had a good article about hospitals and masking, and the kind of guidance around triggers they’ve given them are so vague. They kind of are left to make their own decisions. The CDC actually still really hasn’t emphasized the value of KN95 and N95 respirators over surgical masks. So I think it becomes really hard for those lower-level institutions to sort of push for something that is kind of controversial politically. And a lot of people are just tired of it when they don’t have the support of those bigger institutions saying it. And some of just even figuring out levels of the virus and when that should trigger masking.

It’s much harder to track nowadays because so much of our systems and data reporting is off. So, we have this sense we’re in somewhat of a surge now. Hospitalizations are up and so forth. But again, it’s a lot easier for people to make these decisions and figure out when to pull triggers when you have clear data that says, “This is what’s going on now.” And to some extent we’re … again, there’s a lot of evidence that points to a lot of covid going around now, but we don’t have that sort of hard data that makes it a lot easier for people to justify policy choices.

Raman: You just brought up ventilation and it took time, one, for some scientists to realize that covid is also spread through ultra-tiny particles. But it also took, after that, a while for the White House to pivot its strategy to stress ventilation measures in addition to masks, and face covering. So a lot of places are still kind of behind on having better ventilation in an office, or kind of wherever you’re going.

Rovner: Yeah, I mean, one would think that improving ventilation in schools would improve, not only not spreading covid, but not spreading all of the respiratory viruses that keep kids out of school and that make everybody sick during the winter, during the school year.

Roubein: I was going to piggyback on something Sarah said, which was about how the CDC doesn’t have clear benchmarks on when there should be a guideline for what is high transmission in the hospital for them to reinstate a mask mandate or whatever. But there’s also nuance to consider there. Within that there’s, is there a partial masking rule? Which is like: Does the health care staff have to wear them versus the patients? And does that have enough benefit on its own if it’s only required to one versus the other? I mean, I know that a lot of folks have called for more strict rules with that, but then there’s also the folks that are worried about the backlashes. This has gotten so politicized, how many different medical providers have talked about angst at them, attacks at them, over the polarization of covid? So there’s so many things that are intertwined there that it’s tough to institute something.

Karlin-Smith: I think the other thing is we keep forgetting this is not all about covid. We’ve learned a lot of lessons about public health that could be applicable, like you mentioned in schools, beyond covid. So if you’re in the emergency room, because you have cancer and you need to see a doctor right away. And you’re sitting next to somebody with RSV or the flu, it would also be beneficial to have that patient wearing a mask because if you have cancer, you do not need to add one of these infectious diseases on top of it. So it’s just been interesting, I think, for me to watch because it seemed like at different points in this crisis, we were sort of learning things beyond covid for how it could improve our health care system and public health. But for the most part, it seems like we’ve just kind of gone back to the old ways without really thinking about what we could incorporate from this crisis that would be beneficial in the future.

Rovner: I feel like we’ve lost the “public” in public health. That everybody is sort of, it’s every individual for him or herself and the heck with everybody else. Which is exactly the opposite of how public health is supposed to work. But perhaps we will bounce back. Well, moving on. The Biden administration, via the Consumer Financial Protection Bureau, the CFPB, took the first steps last week to ban medical debt from credit scores, which would be a huge step for potentially tens of millions of Americans whose credit scores are currently affected by medical debt. Last year, the three major credit bureaus, Equifax, Experian, and TransUnion, agreed not to include medical debt that had been paid off, or was under $500 on their credit reports. But that still leaves lots and lots of people with depressed scores that make it more expensive for them to buy houses, or rent an apartment, or even in some cases to get a job. This is a really big deal if medical debt is going to be removed from people’s credit reports, isn’t it?

Roubein: Yeah. I think that was an interesting move when they announced that this week. Because the CFPB had mentioned that in a report they did last year, 20% of Americans have said that they had medical debt. And it doesn’t necessarily appear on all credit reports, but like you said, it can. And having that financial stress while going through a health crisis, or someone in your family going through a health crisis, is layers upon layers of difficulty. And they had also said in their report that medical billing data is not an accurate indicator of whether or not you’ll repay that debt compared to other types of credit. And it also has the layers of insurance disputes, and medical billing errors, and all that sort of thing. So this proposal that they have ends up being finalized as a rule, it could be a big deal. Because some states have been trying to do this on a state-by-state level, but still in pretty early stages in terms of a lot of states being on board. So this can be a big thing for a fifth of people.

Rovner: Yeah, many people. I’m going to give a shout-out here to my KFF Health News colleague Noam Levey, who’s done an amazing project on all of this, and I think helped sort of push this along. Well, while we are on the subject of the Biden administration and money in health care, the Federal Trade Commission is suing a private equity-backed doctors group, U.S. Anesthesia Partners, charging anti-competitive behavior, that it’s driving up the price of anesthesia services by consolidating all the big anesthesiology practices in Texas, among other things. FTC Chair Lina Khan said the agency “will continue to scrutinize and challenge serial acquisitions roll-ups and other stealth consolidation schemes that unlawfully undermine fair competition and harm the American public.” This case is also significant because the FTC is suing not just the anesthesia company, but the private equity firm that backs it, Welsh, Carson, Anderson & Stowe, which is one of the big private equity firms in health care. Is this the shot across the bow for private equity and health care that a lot of people have been waiting for? I mean, we’ve been talking about private equity and health care for three or four years now.

Karlin-Smith: I think that’s what the FTC is hoping for. They’re saying not just that we’re going after anti-competitive practices in health care, that, I think, they’re making a clear statement that they’re going after this particular type of funder, which we’ve seen has proliferated around the system. And I think this week there was a report from the government showing that CMS can’t even track all of the private equity ownership of nursing homes. So we know this isn’t the only place where doctors’ practices being bought up by private equity has been seen as potentially problematic. So this has been a very sort of activist, I think, aggressive FTC in health care in general, and in a number of different sectors. So I think they’re ready to deliberate, with their actions and warnings.

Rovner: Yeah, it’s interesting. I mean, we mostly think, those of us who have followed the FTC in healthcare, which gets pretty nerdy right there, usually think of big hospital groups trying to consolidate, or insurers trying to consolidate these huge mega-mergers. But what’s been happening a lot is these private equity companies have come in and bought up physician practices. And therefore they become the only providers of anesthesia, or the only providers of emergency care, or the only providers of kidney dialysis, or the only providers of nursing homes, and therefore they can set the prices. And those are not the level of deals that tend to come before the FTC. So I feel like this is the FTC saying, “See you little people that are doing big things, we’re coming for you too.” Do we think this might dampen private equity’s enthusiasm? Or is this just going to be a long-drawn-out struggle?

Roubein: I could see it being more of a long-drawn-out struggle because even if they’re showing it as an example, there’s just so many ways that this has been done in so many kind of sectors as you’ve seen. So I think it remains to be seen further down the line as this might happen in a few different ways to a few different folks, and how that kind of plays out there. But it might take some time to get to that stage.

Karlin-Smith: I was going to say it’s always worth also thinking about just the size and budget of the FTC in comparison to the amount of private actors like this throughout the health system. So I mean, I think that’s one reason sometimes why they do try and kind of use that grandstanding symbolic messaging, because they can’t go after every bad actor through that formal process. So they have to do the signaling in different ways.

Raman: I think probably as we’ve all learned as health reporters, it takes a really long time for there to be change in the health care system.

Rovner: And I was just going to say, one thing we know about people who are in health care to make money is that they are very creative in finding ways to do it. So whatever the rules are, they’re going to find ways around them and we will just sort of keep playing this cat and mouse for a while. All right, well finally this week, a story that probably should have gotten more attention. The White House last week announced creation of the first-ever Office of Gun Violence Prevention to be headed by Vice President Kamala Harris. Its role will be to help implement the very limited gun regulation passed by Congress in 2022, and to coordinate other administration efforts to curb gun violence. I know that this is mostly for show, but sometimes don’t you really have to elevate an issue like this to get people to pay attention, to point out that maybe you’re trying to do something? Talk about things that have been hard for the government to do over the last couple of decades.

Raman: It took Congress a long time to then pass a new gun package, which the shooting in Uvalde last year ended up catalyzing. And Congress actually got something done, which was more limited than some gun safety advocates wanted. But it does take a lot to get gun safety reform across the finish line.

Rovner: I know. I mean, it’s one of those issues that the public really, really seems to care about, and that the government really, really, really has trouble doing. I’ve been covering this so long, I remember when they first banned gun violence research at HHS back in the mid-1990s. That’s how far back I go, that they were actually doing it. And the gun lobby said, “No, no, no, no, no. We don’t really want these studies that say that if you have a gun in the house, it’s more likely to injure somebody, and not necessarily the bad guy.” They were very unhappy, and it took until three or four years ago for that to be allowed to be funded. So maybe the idea that they’re elevating this somewhat, to at least wave to the public and say, “We’re trying. We’re fighting hard. We’re not getting very far, but we’re definitely trying.” So I guess we will see how that comes out.

All right, well that is this week’s news. Now, we will play my “Bill of the Month” interview with Sam Liss, and then we’ll come back with our extra credits. I am pleased to welcome to the podcast my KFF Health News colleague Samantha Liss, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” installment. Welcome.

Liss: Hi.

Rovner: This month’s bill involves a patient who died in the hospital, right? Tell them who he was, what he was sick with, and about his family.

Liss: Yeah. So Kent Reynolds died after a lengthy hospital stay in February of 2022. He was actually discharged after complications from colon cancer, and died in his home. And his widow, Eloise Reynolds, was left with a series of complicated hospital bills, and she reached out to us seeking help after she couldn’t figure them out. And her and Kent were married for just shy of 34 years. They lived outside of St. Louis and they have two adult kids.

Rovner: So Eloise Reynolds received what she assumed was the final hospital bill after her husband died, which she paid, right?

Liss: Yeah, she did. She paid what she thought was the final bill for $823, but a year later she received another bill for $1,100. And she was confused as to why she owed it. And no one could really give her a sufficient answer when she reached out to the hospital system, or the insurance company.

Rovner: Can a hospital even send you a bill a year after you’ve already paid them?

Liss: You know what, after looking into this, we learned that yeah, they actually can. There’s not much in the way that stops them from coming after you, demanding more money, months, or even years later.

Rovner: So this was obviously part of a dispute between the insurance company and the hospital. What became of the second bill, the year-later bill?

Liss: Yeah. After Eloise Reynolds took out a yardstick and went line by line through each charge and she couldn’t find a discrepancy or anything that had changed, she reached out to KFF Health News for help. And she was still skeptical about the bill and didn’t want to pay it. And so when we reached out to the health system, they said, “Actually, you know what? This is a clerical error. She does not owe this money.” And it sort of left her even more frustrated, because as she explained to us, she says, “I think a lot of people would’ve ended up paying this additional amount.”

Rovner: So what’s the takeaway here? What do you do if you suddenly get a bill that comes, what seems, out of nowhere?

Liss: The experts we talked to said Eloise did everything right. She was skeptical. She compared, most importantly, the bills that she was getting from the hospital system against the EOBs that she was getting from her insurance company.

Rovner: The explanation of benefits form.

Liss: That’s right. The explanation of benefits. And she was comparing those two against one another, to help guide her on what she should be doing. And because those were different between the two of them, she was left even more confused. I think folks that we spoke to said, “Yeah, she did the right thing by pushing back and demanding some explanations.”

Rovner: So I guess the ultimate lesson here is, if you can’t get satisfaction, you can always write to us.

Liss: Yeah, I hate to say that in a way, because that’s a hard solution to scale for most folks. But yeah, I mean, I think it points to just how confusing our health care system is. Eloise seemed to be a pretty savvy health care consumer, and she even couldn’t figure it out. And she was pretty tenacious in her pursuit of making phone calls to both the insurance company and the hospital system. And I think when she couldn’t figure that out, and she finally turned to us asking for help.

Rovner: So well, another lesson learned. Samantha Liss, thank you very much for joining us.

Liss: Thanks.

Rovner: Hey, “What the Health?” listeners, you already know that few things in health care are ever simple. So, if you like our show, I recommend you also listen to “Tradeoffs,” a podcast that goes even deeper into our costly, complicated, and often counterintuitive health care system. Hosted by longtime health care journalist and friend Dan Gorenstein, “Tradeoffs” digs into the evidence and research data behind health care policies and tells the stories of real people impacted by decisions made in C-suites, doctors’ offices, and even Congress. Subscribe wherever you listen to your podcasts.

OK, we’re back. It’s time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org, and in our show notes on your phone or other mobile device. Sarah, you were the first to choose this week, so you get to go first.

Karlin-Smith: Sure. I looked at a story in the Los Angeles Times, “California Workers Who Cut Countertops Are Dying of an Incurable Disease,” by Emily Alpert Reyes and Cindy Carcamo. Hopefully I didn’t mispronounce her name. They wrote a really fascinating but sad story about people working in an industry where they’re cutting engineered stone countertops for people’s kitchens and so forth. And because of the materials in this engineered product, they’re inhaling particles that is basically giving people at a very young age incurable and deadly lung disease. And it’s an interesting public health story about sort of the lack of protection in place for some of the most vulnerable workers. It seems like this industry is often comprised of immigrant workers. Some who kind of essentially go to … outside a Home Depot, the story suggests, or something like that and kind of get hired for day labor.

So they just don’t have the kind of power to sort of advocate for protections for themselves. And it’s just also an interesting story to think about, as consumers I think people are not always aware of the costs of the products they’re choosing. And how that then translates back into labor, and the health of the people producing it. So, really fascinating, sad piece.

Rovner: Another product that you have to sort of … I remember when they first were having the stories about the dust in microwave popcorn injuring people. Sandhya, why don’t you go next?

Raman: So my extra credit this week is from NPR and it’s by Meg Anderson. And it’s called “1 in 4 Inmate Deaths Happen in the Same Federal Prison. Why?” This is really interesting. It’s an investigation that looks at the deaths of individuals who died either while serving in federal prison or right after. And they looked at some of the Bureau of Prisons data, and it showed that 4,950 people had died in custody over the past decade. But more than a quarter of them were all in one correctional facility in Butner, North Carolina. And the investigation found out that the patients here and nationwide are dying at a higher rate, and the incarcerated folks are not getting care for serious illnesses — or very delayed care, until it’s too late. And the Butner facility has a medical center, but a lot of times the inmates are being transferred there when it was already too late. And then it’s really sad the number of deaths is just increasing. And just, what can be done to alleviate them?

Rovner: It was a really interesting story. Rachel.

Roubein: My extra credit, the headline is “A Decades-Long Drop in Teen Births Is Slowing, and Advocates Worry a Reversal Is Coming,” by Catherine Sweeney from WPLN, in partnership with KFF Health News. And she writes about the national teen birth rate and how it’s declined dramatically over the past three decades. And that, essentially, it’s still dropping, but preliminary data released in June from the CDC shows that that descent may be slowing. And Catherine had talked to doctors and other service providers and advocates, who essentially expressed concern that the full CDC dataset release later this year can show a rise in teen births, particularly in Southern states. And she talked to experts who pointed to several factors here, including the Supreme Court’s decision to overturn Roe v. Wade, intensifying political pushback against sex education programs, and the impact of the pandemic on youth mental health.

Rovner: Yeah. There’ve been so many stories about the decline in teen birth, which seemed mostly attributable to them being able to get contraception. To get teens not to have sex was less successful than getting teens to have safer sex. So we’ll see if that tide is turning. Well, I’m still on the subject of health costs this week. My story is a study from JAMA Internal Medicine that was conducted in part by Shark Tank panelist Mark Cuban, for whom health price transparency has become something of a crusade. This study is of a representative sample of 60 hospitals of different types conducted by researchers from the University of Texas. And it assessed whether the online prices posted for two common procedures, vaginal childbirth and a brain MRI, were the same as the prices given when a consumer called to ask what the price would be. And surprise. Mostly they were not. And often the differences were very large. In fact, to quote from the study, “For vaginal childbirth, there were five hospitals with online prices that were greater than $20,000, but telephone prices of less than $10,000. The survey was done in the summer of 2022, which was a year and a half after hospitals were required to post their prices online.” At some point, you have to wonder if anything is going to work to help patients sort out the prices that they are being charged for their health care. Really eye-opening study.

All right, that is our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks as always to our amazing engineer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can still find me at X, @jrovner. Sarah.

Karlin-Smith: I’m @SarahKarlin, or @sarahkarlin-smith.

Rovner: Sandhya.

Raman: @SandhyaWrites

Rovner: Rachel.

Roubein: @rachel_roubein

Rovner: We will be back in your feed next week. Until then, be healthy.

Credits

Francis Ying
Audio producer

Emmarie Huetteman
Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

The Host

Julie Rovner
KFF Health News

@jrovner

Read Julie's stories.

Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

Health and other federal programs are at risk of shutting down, at least temporarily, as Congress races toward the Oct. 1 start of the fiscal year without having passed any of its 12 annual appropriations bills. A small band of conservative House Republicans are refusing to approve spending bills unless domestic spending is cut beyond levels agreed to in May.

Meanwhile, former President Donald Trump roils the GOP presidential primary field by vowing to please both sides in the divisive abortion debate.

This week’s panelists are Julie Rovner of KFF Health News, Alice Miranda Ollstein of Politico, Rachel Cohrs of Stat News, and Tami Luhby of CNN.

Panelists

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories

Rachel Cohrs
Stat News

@rachelcohrs

Read Rachel's stories

Tami Luhby
CNN

@Luhby

Read Tami's stories

Among the takeaways from this week’s episode:

• The odds of a government shutdown over spending levels are rising. While entitlement programs like Medicare would be largely spared, past shutdowns have shown that closing the federal government hobbles things Americans rely on, like food safety inspections and air travel.
• In Congress, the discord isn’t limited to spending bills. A House bill to increase price transparency in health care melted down before a vote this week, demonstrating again how hard it is to take on the hospital industry. Legislation on how pharmacy benefit managers operate is also in disarray, though its projected government savings means it could resurface as part of a spending deal before the end of the year.
• On the Senate side, legislation intended to strengthen primary care is teetering under Bernie Sanders’ stewardship — in large part over questions about how to pay for it. Also, this week Democrats broke Alabama Republican Sen. Tommy Tuberville’s abortion-related blockade of military promotions (kind of), going around him procedurally to confirm the new chair of the Joint Chiefs of Staff.
• And some Republicans are breaking with abortion opponents and mobilizing in support of legislation to renew the United States President’s Emergency Plan for AIDS Relief — including the former president who spearheaded the program, George W. Bush. Meanwhile, polling shows President Joe Biden is struggling to claim credit for the new Medicare drug negotiation program.
• And speaking of past presidents, former President Donald Trump gave NBC an interview over the weekend in which he offered a muddled stance on abortion. Vowing to settle the long, inflamed debate over the procedure — among other things — Trump’s comments were strikingly general election-focused for someone who has yet to win his party’s nomination.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:

Julie Rovner: The Washington Post’s “Inside the Gold Rush to Sell Cheaper Imitations of Ozempic,” by Daniel Gilbert.

Alice Miranda Ollstein: Politico’s “The Anti-Vaccine Movement Is on the Rise. The White House Is at a Loss Over What to Do About It,” by Adam Cancryn.

Rachel Cohrs: KFF Health News’ “Save Billions or Stick With Humira? Drug Brokers Steer Americans to the Costly Choice,” by Arthur Allen.

Tami Luhby: CNN’s “Supply and Insurance Issues Snarl Fall Covid-19 Vaccine Campaign for Some,” by Brenda Goodman.

Also mentioned in this week’s episode:

• The AP’s “Biden’s Medicare Price Negotiation Is Broadly Popular. But He’s Not Getting Much Credit,” by Seung Min Kim and Linley Sanders.
• Roll Call’s “Sanders, Marshall Reach Deal on Health Programs, but Challenges Remain,” by Jessie Hellmann and Lauren Clason.

CLICK TO EXPAND THE TRANSCRIPT

Transcript: Countdown to Shutdown

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]

Julie Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News. And I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Sept. 21, at 9 a.m. because, well, lots of news this week. And as always, news happens fast, and things might well have changed by the time you hear this. So here we go. We are joined today via video conference by Tami Luhby of CNN.

Tami Luhby: Good morning.

Rovner: Rachel Cohrs of Stat News.

Rachel Cohrs: Hi, everybody.

Rovner: And Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Hello.

Rovner: Let’s get to some of that news. We will begin on Capitol Hill, where I might make a T-shirt from this tweet from Wednesday from longtime congressional reporter Jake Sherman: “I feel like this is not the orderly appropriations process that was promised after the debt ceiling deal passed.” For those of you who might’ve forgotten, many moons ago, actually it was May, Congress managed to avoid defaulting on the national debt, and as part of that debt ceiling deal agreed to a small reduction in annual domestic spending for the fiscal year that starts Oct. 1 (as in nine days from now). But some of the more conservative Republicans in the House want those cuts to go deeper, much deeper, in fact. And now they’re refusing to either vote for spending bills approved by the Republican-led appropriations committee or even for a short-term spending bill that would keep the government open after this year’s funding runs out. So how likely is a shutdown at this point? I would hazard a guess to say pretty likely. And anybody disagree with that?

Ollstein: It’s more likely than it was a week or two ago, for sure. The fact that we’re at the point where the House passing something that they know is dead on arrival in the Senate would be considered a victory for them. And so, if that’s the case, you really have to wonder what the end game is.

Rovner: Yeah, I mean it was notable, I think, that the House couldn’t even pass the rule for the Defense Appropriations Bill, which is the most Republican-backed spending bill, and the House couldn’t get that done. So I mean it does not bode well for the fate of some of these domestic programs that Republicans would, as I say, like to cut a lot deeper. Right?

Cohrs: Democrats are happy, I think, to watch Republicans flail for a while. I think we saw this during the speaker votes. Obviously, a CR [continuing resolution] could pass with wide bipartisan support, but I think there’s a political interest for Democrats going into an election year next year to lean into the idea of the House Republican chaos and blaming them for a shutdown. So I wouldn’t be too optimistic about Democrats billing them out anytime soon.

Rovner: But, bottom line, of course, is that a shutdown is not great for Democrats who support things that the government does. I mean, Tami, you’re watching, what does happen if there’s a shutdown? Not everything shuts down and not all the money stops flowing.

Luhby: No, and the important thing, unlike in the debt ceiling, potentially, was that Social Security will continue, Medicare will continue, but it’ll be very bothersome to a lot of people. There’ll be important things that … potentially chaos at airlines and food safety inspectors. I mean some of them are sometimes considered essential workers, but there’s still issues there. So people will be mad because they can’t go to their national parks potentially. I mean it’s different every time, so it’s a little hard to say exactly what the effects will be and we’ll see also whether this will be a full government shutdown, which will be much more serious than a partial government shutdown, although at this point it doesn’t look like they’re going to get any of the appropriation bills through.

Rovner: I was going to say, yeah, sometimes when they get some of the spending bills done, there’s a partial shutdown because they’ve gotten some of the spending bills done, but I’m pretty sure they’ve gotten zero done now. I think there’s one that managed to pass both the House and the Senate, but basically this would be a full shutdown of everything that’s funded through the appropriations process. Which as Tami points out, the big things are the Smithsonian and the National Zoo close, and national parks close, but also you can’t get an awful lot of government services. Meanwhile, the ill will among House Republicans is apparently rubbing off on other legislation. The House earlier this week was supposed to vote on a relatively noncontroversial package of bills aimed at making hospital insurance and drug prices more transparent, among other things. But even that couldn’t get through. Rachel, what happened to the transparency bill that everybody thought was going to be a slam-dunk?

Cohrs: Well, I don’t think everybody thought it was going to be a slam-dunk given the chaos that we saw, especially in the Democratic Caucus last week, where one out of three chairmen who work on health care in the House endorsed the package, but the other two would not. And they ran into a situation where, with the special rule that they were using to consider the House transparency package, they needed two-thirds vote to pass and they couldn’t get enough Democrats on board to pass it. And I think there were some process concerns from both sides that there was a compromise that came out right after August recess and it hadn’t been socialized properly and they didn’t have their ducks in a row in the Democratic side. But ultimately, I mean, the big picture for me I think was how hard it really is to take on the hospital industry. Because this was the first real effort I think from the House and it melted down before its first vote. That doesn’t mean it’s dead yet, but it was an embarrassment, I think, to everyone who worked on this that they couldn’t get this pretty noncontroversial package through. And when I tried to talk to people about what they actually oppose, it was these tiny little details about a privacy provision or one transparency provision and not with the big idea. It wasn’t ideological necessarily. So I think it was just a reflection on Congress has taken on pharma, they’re working on PBMs this year, but if they really do want to tackle hospital costs, which are a very big part of Medicare spending, it’s going to be a tough road ahead for them.

Rovner: As we like to point out, every single member of Congress has a hospital in their district, and they are quick to let their members of Congress know what they want and how they want them to vote on things. Before we move on, where are we on the PBM legislation? I know there was a whole raft of hearings this week on doing something about PBMs. And my inbox is full of people from both sides. “The PBMs are making drug prices higher.” “No, the PBMs are helping keep drug prices in check.” Where are we with the congressional effort to try and at least figure out what the PBMs do?

Cohrs: Yeah, I think there is still some disarray at this point. I would watch for action in December or whenever we actually have a conversation about government funding because some of these PBM bills do save money, which is the golden ticket in health care because there are a lot of programs that need to be paid for this year. So Congress will continue to debate those over the next couple of weeks, but I think everyone that I talk to is expecting potential passage in a larger package at the end of the year.

Rovner: So speaking of things that need to be paid for, the saga of Sen. Bernie Sanders and the reauthorization of some key primary care programs, including the popular community health center program, continues. When we left off last July, Sen. Sanders, who chairs the Senate Health, Education, Labor & Pensions Committee [HELP], tried to advance a bill to extend and greatly expand primary care programs without negotiating with his ranking Republican on the committee, Louisiana Sen. Bill Cassidy, who had his own bill to renew the programs. Cassidy protested and blocked the bill’s movement and the whole enterprise came to a screeching halt. Last week, Sanders announced he’d negotiated a bipartisan bill, but not with Cassidy, rather with Kansas Republican Roger Marshall, who chairs the relevant subcommittee. Cassidy, however, is still not pleased. Rachel, you’re following this. Sanders has scheduled a markup of the bill for later today. Is it really going to happen?

Cohrs: Well, I think things are on track and the thing to remember about a markup is it passes on a majority. So as long as Sen. Sanders can keep his Democratic members in line and gets Sen. Marshall, then it can pass committee. But I think there are some concerns that other Republicans will share with Sen. Cassidy about how the bill is paid for. There are a lot of ambitious programs to expand workforce training, have debt forgiveness, and address the primary care workforce crisis in a more meaningful way. But the list of pay-fors is a little undisciplined from what I’ve seen, I would say.

Rovner: That’s a good word.

Cohrs: Sen. Sanders is pulling some pay-fors from other committees, which he can’t necessarily do by himself, and they don’t actually have estimates from the Congressional Budget Office for some of the pay-fors that they’re planning to use. They’re just using internal committee math, which I don’t think is going to pass muster with Republicans in the full Senate, even if it gets through committee today. So I think we’ll see some of those concerns flare up. It could get ugly today compared with HELP markups of the past of community health center bills. And there are certainly some concerns about the application of the Hyde Amendment too, and how it would apply to some of this funding as it moves through the appropriations process.

Rovner: That’s the amendment that bans direct government funding of abortion, and there’s always a fight about the Hyde Amendment, which are reauthorizing these health programs. But I mean, we should point out, I mean this is one of the most bipartisanly popular programs, both the community health center program and these programs that basically give federal money to train more primary care doctors, which the country desperately needs. I mean, it’s something that pretty much everybody, or most of Congress, supports, but Cassidy has what, 60 amendments to this bill. I guess he’s really not happy. Cassidy who supports this in general just is unhappy with this process, right?

Cohrs: I think his concern is more that the legislation is half-baked, not that he’s against the idea of it. And Sen. Cassidy did sign on to a more limited House proposal as well, just saying, we need to fund the community health centers, we need to do something. This isn’t ready for prime time. We could see further negotiations, but the time is ticking for this funding to expire.

Rovner: Well, another program whose authorization expires at the end of the month is PEPFAR, the international AIDS/HIV program. It’s being blocked by anti-abortion activists among others, even though it doesn’t have anything to do with the abortion. And this is not just a bipartisan program, it’s a Republican-led program. Former President George W. Bush who signed it into law in 2003, had an op-ed this week pushing for the program in The Washington Post. Alice, you’ve been following this one. Is there any progress on PEPFAR?

Ollstein: Yes and no. There’s not a vote scheduled, there’s not a “Kumbaya” moment, but we are seeing some movement. I call it “Establishment Republican Strike Back.” You have some both on- and off-the-Hill Republicans really mobilizing to say, “Look, we need to reauthorize this program. This is ridiculous.” And they’re going against the anti-abortion groups and their allies on Capitol Hill who say, “No, let’s just extend this program just year by year through appropriations, not a reauthorization.” Which they say would rubber-stamp the Biden administration redirecting money towards abortion, which the Biden administration and everybody else denies is happening. And so we confirmed that Chairman Mike McCaul in the House and Lindsey Graham in the Senate are working with Democrats on some sort of reauthorization bill. It might not be the full five years, it might be three years, we don’t really know yet. But they think that at least a multiyear reauthorization will give the program some stability rather than the one-year funding patch that other House Republicans are mulling. So we’re going to see where this goes; obviously, it’s an interesting test for the influence of these anti-abortion groups on Capitol Hill. And my colleague and I also scooped that former President Bush, who oversaw the creation of this program, is quietly lobbying certain members, having meetings, and so we will see what kind of pull he still has in the party.

Rovner: Well, this was one of his signature achievements, literally. So it’s something that I know that … and we should point out, unlike the spending bills, the appropriation bills, if this doesn’t happen by Oct. 1, nothing stops, it’s just it becomes theoretically unauthorized, like many programs are, and it’s considered not a good sign for the program.

Luhby: One thing I also wanted to just bring up quickly, tangentially related to health care, but also showing how bipartisan programs are not getting the support that they did, is the WIC program, which is food assistance for women, infants and children, needs more money. Actually participation is up, but even before that, the House Republicans wanted to cut the funding for it, and that was going to be a big divide between them and the Senate. And now because participation is up, the Biden administration is actually asking for another $1.4 billion for the program. This is a program that, again, has always had support and has been fully funded, not had to turn people away. And now it’s looking that many women and small children may not be able to get the assistance if Congress isn’t able to actually fund the program fully.

Rovner: Yes, they’re definitely tied in knots. Well, Oct. 1 turns out to be a key date for a lot of health care issues. It’s also the day drugmakers are supposed to notify Medicare whether they will participate in negotiations for the 10 high-cost drugs Medicare has chosen for the first phase of the program that Congress approved last year. But that might all get blocked if a federal judge rules in favor of a suit brought by the U.S. Chamber of Commerce, among others. Rachel, there was a hearing on this last week, where does this lawsuit stand and when do we expect to hear something from the judge?

Cohrs: So the judge didn’t ask any questions of the attorneys, so they were essentially presenting arguments that we’ve already seen previewed in some of the briefing materials. We are expecting some action by Oct. 1, which is when the Chamber had requested a ruling on whether there’s going to be a preliminary injunction, just because drugmakers are supposed to sign paperwork and submit data to CMS by that Oct. 1 date. So I think we are just waiting to see what the ruling might be. Some of the key issues or whether the Chamber actually has standing to file this lawsuit, given it’s not an actual drug manufacturer. And there was some quibbling about what members they listed in the lawsuit. And then I think they only addressed the argument that the negotiation program violated drugmakers’ due process rights, which isn’t the full scope of the lawsuit. It’s not an indicator of success really anywhere else, but it is important because it is the very first test. And if a preliminary injunction is issued, then it brings everything to a halt. So I think it would be very impactful for other drugmakers as well.

Rovner: Nobody told me when I became a health reporter that I was going to have to learn every step of the civil judicial process, and yet here we are. Well, while we are still on the subject of drug prices, a new poll from the AP and the NORC finds that while the public, Republicans and Democrats, still strongly support Medicare being able to negotiate the price of prescription drugs, President [Joe] Biden is getting barely any credit for having accomplished something that Democrats have been pushing for for more than 20 years. Most respondents in the survey either don’t think the plan goes far enough, because, as we point out, it’s only the first 10 drugs, or they don’t realize that he’s the one that helped push it over the finish line. This should have been a huge win and it’s turning out to be a nothing. Is that going to change?

Ollstein: It’s kind of a “Groundhog Day” of the Obamacare experience in which they pass this big, huge reform that people had been fighting for so long, but they’re trying to campaign on it when people aren’t really feeling the effects of it yet. And so when people aren’t really feeling the benefit and they’re hearing, “Oh, we’re lowering your drug prices.” But they’re going to the pharmacy and they’re paying the same very high amount, it’s hard to get a political win from that. The long implementation timeline is against them there. So there are some provisions that kick in more quickly, so we’ll have to see if that makes any kind of difference. I think that’s why you hear them talk a lot about the insulin price cap because that is already in effect, but that hits fewer people than the bigger negotiation will theoretically hit eventually. So it’s tough, and I think it leaves a vacuum where the drug industry and conservatives can fearmonger or raise concerns and say, “This will make drugs inaccessible and they won’t submit new cures for approval.” And all this stuff. And because people aren’t feeling the benefits, but they’re hearing those downsides, yeah, that makes the landscape even tougher for Democrats.

Luhby: This is very much the pattern that the Biden administration has had with a lot of its achievements or successes because it’s also not getting any credit for anything in the economy. The job market is relatively strong still, the economy is relatively strong. Yes, we have high inflation and high prices, even though that’s moderated, prices are still high, and that’s what people are seeing. Gas prices are now up again, which is not good for the administration. But they’re touting their Bidenomics, which also includes lowering drug prices. But generally polling shows, including our CNN polling shows, that people do not think the economy is doing well and they’re not giving Biden any credit for anything.

Cohrs: I think part of the problem is that … it’s different from the Affordable Care Act where it was health care, health care, health care for a very long time. This is lumped into a bill called the Inflation Reduction Act. I think it got lumped in with climate, got looped in with tax. And the media, we did our best, but it was hard to explain everything that was in the bill. And Medicare negotiation is complicated, it’s wonky, and I don’t know that people fully understood everything that was in the Inflation Reduction Act when it passed and they capitulated to Sen. [Joe] Manchin for what he wanted to name it. And so I think some of that got muddled when it first passed and they’re kind of trying to do catch-up work to explain, again, like Alice said, something that hasn’t gone into effect, which is a really tough uphill climb.

Rovner: This has been a continuing frustration for Democrats, which is that actually getting legislation done in Washington always involves some kind of compromise, and it’s always going to be incremental. And the public doesn’t really respond to things that are incremental. It’s like, “Why isn’t it bigger? Why didn’t they do what they promised?” And so the Republicans get more credit for stopping things than the Democrats get for actually passing things. Right. Well, let us turn to abortion. The breaking news today is that the Senate is finally acting to bust the blockade Alabama Republican Sen. Tommy Tuberville has had on military promotion since February to protest a Defense Department policy allowing service people leave to travel to other states for abortions. And Tuberville himself is part of this breakage, right, Alice? And it’s not a full breakage.

Ollstein: Right. And there have also been some interesting interviews that maybe raise questions on how much Tuberville understands the mechanics of what he’s doing because he said in an interview, “Oh, well, the people who were in these jobs before, they’ll just stay in it and it’s fine.” And they had to explain, “Well, statutorily, they can’t after a certain date.” And he seemed surprised by that. And now you’re seeing these attempts to go around his own blockade, and Democrats to go around his blockade. In part, for a while, Democrats were really not wanting to do that, schedule these votes, until he fully relented because they thought that would increase the pressure.

Rovner: They didn’t want to do it nomination by nomination for the big-picture ones because they were afraid that would leave behind the smaller ones.

Ollstein: Exactly. But this is dragging on so long that I think you’re seeing some frustration and desire to do something, even if it’s not fully resolving the standoff.

Rovner: And I’m seeing frustration from other Republicans. Again, the idea of a Republican holding up military promotions for six months is something that was not on my Republican Bingo card five years ago or even two years ago. I’m sure he’s not making a lot of his colleagues very happy with this. So on the Republican presidential campaign trail, abortion continues to be a subject all the candidates are struggling with — all of them, it seems, except former President Donald Trump, who said in an interview with NBC on Sunday that he alone can solve this. Francis, you have the tape.

Donald Trump: We are going to agree to a number of weeks or months or however you want to define it, and both sides are going to come together, and both sides, and this is a big statement, both sides will come together and for the first time in 52 years, you’ll have an issue that we can put behind us.

Rovner: OK. Well, Trump — who actually seemed all over the place about where he is on the issue in a fairly bald attempt to both placate anti-abortion hardliners in the party’s base and those who support abortion rights, whose votes he might need if he wants to win another election — criticized his fellow Republicans, who he called, “inarticulate on the subject.” I imagine that’s not going over very well among all of the other Republican candidates, right?

Ollstein: We have a piece up on this this morning. One, Trump is clearly acting like he has already won the primary, so he is trying to speak to a general audience, as you noted, and go after those votes in the middle that he may need and so he’s pitching this compromise. And we have a piece that the anti-abortion groups are furious about this, but they don’t really know what to do about it because he probably is going to be the nominee and they’re probably going to spend tens of millions to help elect him if he is, even though they’re furious with these comments he’s making. And so it’s a really interesting moment for their influence. Of course, Trump is trying to have it both ways, he also is calling himself the most pro-life president of all time. He is continually taking credit for appointing the justices to the Supreme Court who overturned Roe v. Wade.

Rovner: Which he did.

Ollstein: Exactly.

Rovner: Which is true.

Ollstein: Which he definitely did. But he is not toeing the line anymore that these groups want. These groups want him to endorse some sort of federal ban on abortion and they want him to praise states like Florida that have passed even stricter bans. He is not doing that. And so there’s an interesting dynamic there. And now his primary opponents see this as an opening, they’re trailing him in the polls, and so they’re trying to capitalize on this. [Gov. Ron] DeSantis and a bunch of others came out blasting him for these abortion remarks. But again, he’s acting like he’s already won the primary, he’s brushing it off and ignoring them.

Rovner: I love how confident he is though, that there’s a way to settle this — really, that there is a compromise, it’s just nobody’s been smart enough to get to it.

Ollstein: Well, he also, in the same interview, he said he’ll solve the Ukraine-Russia war in a day. So I mean, I think we should consider it in that context. It was interesting when I talked to all these different anti-abortion groups, they all said the idea of cutting some sort of deal is ludicrous. There is no magic deal that everybody would be happy about. If anything …

Rovner: And those on the other side will say the same thing.

Ollstein: Exactly. How could you watch what’s happened over the past year or 30 years and think that’s remotely possible? However, they did acknowledge that him saying that does appeal to a certain kind of voter, who is like, “Yeah, let’s just compromise. Let’s just get past this. I’m sick of all the fighting.” So it’s another interesting tension.

Rovner: Yeah. And I love how Trump always says the quiet part out loud, which is that this is not a great issue for Republicans and they’re not talking about it right. It’s like Republicans know this is a not-great issue for Republicans, but they don’t usually say that in an interview on national television. That is Trump, and this will continue. Well, finally this week I wanted to talk about what I am calling the dark underbelly of the new weight loss drugs. This is my extra credit this week. It’s a Washington Post story by Daniel Gilbert called “Inside the Gold Rush to Sell Cheaper Imitations of Ozempic.” It’s about the huge swell of sometimes not-so-legitimate websites and wellness spas selling unapproved formulations of semaglutide and tirzepatide — better known by their brand names Ozempic, Wegovy, and Mounjaro — to unsuspecting consumers because the demand for these diabetes drugs is so high for people who want to lose weight. The FDA has declared semaglutide at least to be in shortage for the people it was originally approved for, those with Type 2 diabetes. But that designation legally allows compounding pharmacies to manufacture their own versions, at least in some cases, except to quote the piece, “Since then, a parallel marketplace with no modern precedent has sprung up attracting both licensed medical professionals and entrepreneurs with histories ranging from regulatory violations to armed robbery.” Meanwhile, and this is coming from a separate story, both Eli Lilly and Novo Nordisk, the manufacturers of the approved versions of the drugs, are suing companies they say are selling unapproved versions of their drug, including, in some cases, drugs that actually pretend to be the brand name drug that aren’t. This is becoming really a big messy buyer-beware market, right? Rachel, you guys have written about this.

Cohrs: It has. Yeah, my colleagues have done great coverage, including I think the lawsuit by manufacturers of these drugs who are seeing their profits slipping through their fingers as patients are turning to these alternatives that aren’t necessarily approved by the FDA. And I think there are also risks because we have seen some side effects from these medications; they range from some very serious GI symptoms to strange dreams. There’s just a whole lot going on there. And I think it is concerning that some patients are getting ahold of these medications, which are expensive if you’re buying them the traditional way. And again, for weight loss, I think some of these medications are still off-label, they’re not FDA-approved. So if they’re getting these without any supervision from a medical provider or somebody who they can ask when they have questions that come up and are monitoring for some of these other side effects, then I think it is a very dangerous game for these patients. And I think it’s just a symptom of this outpouring of interest and the regulators’, I think, failure to keep up with it. And there’s also some supply concerns. So I think it’s just this perfect storm of desperation from patients and the bureaucracy struggling to keep up.

Rovner: Yeah. One of the reasons I chose the story is I really feel like this is unprecedented. I mean, I suppose it could have been predicted because these drugs do seem to be very good at what they do and they are very expensive and very hard to get, so not such a surprise that not-so-honest people might spring up to try and fill the void. But it’s still a little bit scary to see people selling heaven only knows what to people who are very anxious to take things.

Luhby: And in related news, there are more doctors who are interested in obesity medicine now, so everyone is trying to cash in.

Rovner: Yeah, I mean, eventually I imagine this will sort itself out. It’s just that at the beginning when it’s so popular, although I will still … I keep thinking this, is the solution to really throw this much money at it or to try to figure out how to make these drugs cheaper? If it’s going to be such a societal good, maybe we should do something about the price. Anyway, that is my extra credit in this week’s news. Now we will take a quick break and then we’ll come back with the rest of our extra credits.

Hey, “What the Health?” listeners, you already know that few things in health care are ever simple. So, if you like our show, I recommend you also listen to “Tradeoffs,” a podcast that goes even deeper into our costly, complicated, and often counterintuitive health care system. Hosted by longtime health care journalist and friend Dan Gorenstein, “Tradeoffs” digs into the evidence and research data behind health care policies and tells the stories of real people impacted by decisions made in C-suites, doctors’ offices, and even Congress. Subscribe wherever you listen to your podcasts.

OK, we are back and it’s time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it; we will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Tami, why don’t you go first this week?

Luhby: Sure. Well, this week I chose a good story by one of my colleagues, Brenda Goodman. It’s titled “Supply and Insurance Issues Snarl Fall Covid-19 Vaccine Campaign for Some.” And we’ve all been hearing this, I heard this from a friend of mine who’s a doctor, we know Cynthia Cox at KFF tweeted about this. And that even though the new vaccines are ready and the Biden administration has been pushing people to go get them, and many people are eager to get them, they’re not so easy to get. Either because drugstores are running out, that’s what happened to my friend. She went in and said there just wasn’t any supply available. Or for some other people, they’re supposed to be free for most Americans, but the insurance companies haven’t caught up with that yet. So they go in and either they’re denied or the pharmacy tells them that they have to pay potentially $200 for the vaccines. So the problem here is that there’s already an issue with getting vaccines and people getting vaccinated in this country and then putting up extra hurdles for them will only cause more problems and cause fewer people to get vaccinated because some people may not come back.

Rovner: Talk about something that should have been predictable. The distributors knew it was going to be available and pretty much when, and the insurance companies knew it was going to be available and pretty much when, and yet somehow they seem to have not gotten their act together when the predictable surge of people wanting to get the vaccine early came about. Alice, you wanted to add something?

Ollstein: Just anecdotally, the supply and the demand are completely out of whack. My partner is back home in Alabama right now and he was at a pharmacy where they were just wandering around asking random people, “Will you take the shot? Will you take the shot?” And a bunch of people were saying, “No.” And meanwhile, here in D.C., myself and everyone I know is just calling around wanting to get it and not able to. And so you think we’d have figured this out better after so many years of this.

Rovner: Well, I have an appointment for tomorrow. We’ll see if it happens. Rachel, why don’t you go next?

Cohrs: Sure. I chose a KFF Health News story by Arthur Allen, and the headline is “Save Billions or Stick With Humira? Drug Brokers Steer Americans to the Costly Choice.” And I just love a story where it’s off the news cycle a little bit and we see this big splashy announcement. And I think Arthur did a great job of following up here and seeing what actually was happening with formulary placement for Humira and the new biosimilars that just came on the market.

Rovner: Yep. Remind us what Humira is?

Cohrs: Oh, yeah. So it’s one of the most profitable drugs ever. The company that makes it, AbbVie, had created this big patent thicket to try to prevent it from competition for a very long time, but this year saw competition that had been on the market in Europe finally come online in the U.S. So again, a big change for AbbVie, for the market. But I think there was concern about whether people would actually switch to these new medications that have lower prices. But again, as it gets caught up and spit out of our drug supply chain, there are a whole lot of incentives that don’t necessarily result in the cheaper medication being prescribed. And Arthur found that Express Scripts and Optum, which are two of the three biggest pharmacy benefit managers, have the biosimilar versions of Humira at the same price as Humira. So that doesn’t really create a lot of incentive for people to switch. So I think it was just great follow-up reporting and we don’t really have a lot of visibility into these formularies sometimes. So I think it was a illuminating piece.

Rovner: Yeah. And the mess that is drug pricing. Alice.

Ollstein: So I also chose a great piece by my colleague Adam Cancryn and it’s called “The Anti-Vaccine Movement Is on the Rise. The White House Is at a Loss Over What to Do About It.” It’s part of a series we’re doing on anti-vax sentiment and its impacts. And this is just going into how the Biden administration really doesn’t have a plan for combating this, even as it’s posing a bigger and bigger public health threat. And some of their attempts to go after misinformation online were stymied in court and they also are struggling with not wanting to elevate it by debunking it — that that age-old tension of, is it better to just ignore it or is it better to combat it directly? A lot of this is also tying into RFK Jr.’s presidential bid and how much to acknowledge that or not. But the impact is that they’re not really taking this on, even as it’s getting worse and worse in the country.

Rovner: And I got a bunch of emails this week about the anti-vax movement spreading to pets — that people are now resisting getting their dogs and cats vaccinated. Seriously. I mean, it is a serious problem. Obviously, if people stop getting rabies vaccines, that could be a big deal. So something else to watch. All right. Well, I already did my extra credit. So that is it for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks as always to our indefatigable engineer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me; I’m still @jrovner on X and on Bluesky. Tami?

Luhby: You can tweet me at @Luhby. I sometimes check it still.

Rovner: Rachel.

Cohrs: I’m on X @rachelcohrs.

Rovner: Alice.

Ollstein: I’m @AliceOllstein.

Rovner: We will be back in your feed next week. Until then, be healthy.

Credits

Francis Ying
Audio producer

Emmarie Huetteman
Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

But it isn’t here yet. Makers of biosimilars must still work within a health care system in which basic economics rarely seems to hold sway.

For real competition to take hold, the big pharmacy benefit managers, or PBMs, the companies that negotiate prices and set the prescription drug menu for 80% of insured patients in the United States, would have to position the new drugs favorably in health plans.

They haven’t, though the logic for doing so seems plain.

Humira has enjoyed high-priced U.S. exclusivity for 20 years. Its challengers could save the health care system $9 billion and herald savings from the whole class of drugs called biosimilars — a windfall akin to the hundreds of billions saved each year through the purchase of generic drugs.

The biosimilars work the same way as Humira, an injectable treatment for rheumatoid arthritis and other autoimmune diseases. And countries such as the United Kingdom, Denmark, and Poland have moved more than 90% of their Humira patients to the rival drugs since they launched in Europe in 2018. Kaiser Permanente, which oversees medical care for 12 million people in eight U.S. states, switched most of its patients to a biosimilar in February and expects to save $300 million this year alone.

Biologics — both the brand-name drugs and their imitators, or biosimilars — are made with living cells, such as yeast or bacteria. With dozens of biologics nearing the end of their patent protection in the next two decades, biosimilars could generate much higher savings than generics, said Paul Holmes, a partner at Williams Barber Morel who works with self-insured health plans. That’s because biologics are much more expensive than pills and other formulations made through simpler chemical processes.

For example, after the first generics for the blockbuster anti-reflux drug Nexium hit the market in 2015, they cost around $10 a month, compared with Nexium’s $100 price tag. Coherus BioSciences launched its Humira biosimilar, Yusimry, in July at $995 per two-syringe carton, compared with Humira’s $6,600 list price for a nearly identical product.

“The percentage savings might be similar, but the total dollar savings are much bigger,” Holmes said, “as long as the plan sponsors, the employers, realize the opportunity.”

That’s a big if.

While a manufacturer may need to spend a few million dollars to get a generic pill ready to market, makers of biosimilars say their development can require up to eight years and $200 million. The business won’t work unless they gain significant market share, they say.

The biggest hitch seems to be the PBMs. Express Scripts and Optum Rx, two of the three giant PBMs, have put biosimilars on their formularies, but at the same price as Humira. That gives doctors and patients little incentive to switch. So Humira remains dominant for now.

“We’re not seeing a lot of takeup of the biosimilar,” said Keith Athow, pharmacy director for Tennessee’s group insurance program, which covers 292,000 state and local employees and their dependents.

The ongoing saga of Humira — its peculiar appeal to drug middlemen and insurers, the patients who’ve benefited, the patients who’ve suffered as its list price jumped sixfold since 2003 — exemplifies the convoluted U.S. health care system, whose prescription drug coverage can be spotty and expenditures far more unequal than in other advanced economies.

Biologics like Humira occupy a growing share of U.S. health care spending, with their costs increasing 12.5% annually over the past five years. The drugs are increasingly important in treating cancers and autoimmune diseases, such as rheumatoid arthritis and inflammatory bowel disease, that afflict about 1 in 10 Americans.

Humira’s $200 billion in global sales make it the best-selling drug in history. Its manufacturer, AbbVie, has aggressively defended the drug, filing more than 240 patents and deploying legal threats and tweaks to the product to keep patent protections and competitors at bay.

The company’s fight for Humira didn’t stop when the biosimilars finally appeared. The drugmaker has told investors it doesn’t expect to lose much market share through 2024. “We are competing very effectively with the various biosimilar offerings,” AbbVie CEO Richard Gonzalez said during an earnings call.

How AbbVie Maintains Market Share

One of AbbVie’s strategies was to warn health plans that if they recommended biosimilars over Humira they would lose rebates on purchases of Skyrizi and Rinvoq, two drugs with no generic imitators that are each listed at about $120,000 a year, according to PBM officials. In other words, dropping one AbbVie drug would lead to higher costs for others.

Industry sources also say the PBMs persuaded AbbVie to increase its Humira rebates — the end-of-the-year payments, based on total use of the drug, which are mostly passed along by the PBMs to the health plan sponsors. Although rebate numbers are kept secret and vary widely, some reportedly jumped this year by 40% to 60% of the drug’s list price.

The leading PBMs — Express Scripts, Optum, and CVS Caremark — are powerful players, each part of a giant health conglomerate that includes a leading insurer, specialty pharmacies, doctors’ offices, and other businesses, some of them based overseas for tax advantages.

Yet challenges to PBM practices are mounting. The Federal Trade Commission began a major probe of the companies last year. Kroger canceled its pharmacy contract with Express Scripts last fall, saying it had no bargaining power in the arrangement, and, on Aug. 17, the insurer Blue Shield of California announced it was severing most of its business with CVS Caremark for similar reasons.

Critics of the top PBMs see the Humira biosimilars as a potential turning point for the secretive business processes that have contributed to stunningly high drug prices.

Although list prices for Humira are many times higher than those of the new biosimilars, discounts and rebates offered by AbbVie make its drug more competitive. But even if health plans were paying only, say, half of the net amount they pay for Humira now — and if several biosimilar makers charged as little as a sixth of the gross price — the costs could fall by around $30,000 a year per patient, said Greg Baker, CEO of AffirmedRx, a smaller PBM that is challenging the big companies.

Multiplied by the 313,000 patients currently prescribed Humira, that comes to about $9 billion in annual savings — a not inconsequential 1.4% of total national spending on pharmaceuticals in 2022.

The launch of the biosimilar Yusimry, which is being sold through Mark Cuban’s Cost Plus Drugs pharmacy and elsewhere, “should send off alarms to the employers,” said Juliana Reed, executive director of the Biosimilars Forum, an industry group. “They are going to ask, ‘Time out, why are you charging me 85% more, Mr. PBM, than what Mark Cuban is offering? What is going on in this system?’”

Cheaper drugs could make it easier for patients to pay for their drugs and presumably make them healthier. A KFF survey in 2022 found that nearly a fifth of adults reported not filling a prescription because of the cost. Reports of Humira patients quitting the drug for its cost are rife.

Convenience, Inertia, and Fear

When Sue Lee of suburban Louisville, Kentucky, retired as an insurance claims reviewer and went on Medicare in 2017, she learned that her monthly copay for Humira, which she took to treat painful plaque psoriasis, was rising from $60 to $8,000 a year.

It was a particularly bitter experience for Lee, now 81, because AbbVie had paid her for the previous three years to proselytize for the drug by chatting up dermatology nurses at fancy AbbVie-sponsored dinners. Casting about for a way to stay on the drug, Lee asked the company for help, but her income at the time was too high to qualify her for its assistance program.

“They were done with me,” she said. Lee went off the drug, and within a few weeks the psoriasis came back with a vengeance. Sores covered her calves, torso, and even the tips of her ears. Months later she got relief by entering a clinical trial for another drug.

Health plans are motivated to keep Humira as a preferred choice out of convenience, inertia, and fear. While such data is secret, one Midwestern firm with 2,500 employees told KFF Health News that AbbVie had effectively lowered Humira’s net cost to the company by 40% after July 1, the day most of the biosimilars launched.

One of the top three PBMs, CVS Caremark, announced in August that it was creating a partnership with drugmaker Sandoz to market its own cut-rate version of Humira, called Hyrimoz, in 2024. But Caremark didn’t appear to be fully embracing even its own biosimilar. Officials from the PBM notified customers that Hyrimoz will be on the same tier as Humira to “maximize rebates” from AbbVie, Tennessee’s Athow said.

Most of the rebates are passed along to health plans, the PBMs say. But if the state of Tennessee received a check for, say, $20 million at the end of last year, it was merely getting back some of the $48 million it already spent.

“It’s a devil’s bargain,” said Michael Thompson, president and CEO of the National Alliance of Healthcare Purchaser Coalitions. “The happiest day of a benefit executive’s year is walking into the CFO’s office with a several-million-dollar check and saying, ‘Look what I got you!’”

Executives from the leading PBMs have said their clients prefer high-priced, high-rebate drugs, but that’s not the whole story. Some of the fees and other payments that PBMs, distributors, consultants, and wholesalers earn are calculated based on a drug’s price, which gives them equally misplaced incentives, said Antonio Ciaccia, CEO of 46Brooklyn, a nonprofit that researches the drug supply chain.

“The large intermediaries are wedded to inflated sticker prices,” said Ciaccia.

AbbVie has warned some PBMs that if Humira isn’t offered on the same tier as biosimilars it will stop paying rebates for the drug, according to Alex Jung, a forensic accountant who consults with the Midwest Business Group on Health.

AbbVie did not respond to requests for comment.

One of the low-cost Humira biosimilars, Organon’s Hadlima, has made it onto several formularies, the ranked lists of drugs that health plans offer patients, since launching in February, but “access alone does not guarantee success” and doesn’t mean patients will get the product, Kevin Ali, Organon’s CEO, said in an earnings call in August.

If the biosimilars are priced no lower than Humira on health plan formularies, rheumatologists will lack an incentive to prescribe them. When PBMs put drugs on the same “tier” on a formulary, the patient’s copay is generally the same.

In an emailed statement, Optum Rx said that by adding several biosimilars to its formularies at the same price as Humira, “we are fostering competition while ensuring the broadest possible choice and access for those we serve.”

Switching a patient involves administrative costs for the patient, health plan, pharmacy, and doctor, said Marcus Snow, chair of the American College of Rheumatology’s Committee on Rheumatologic Care.

Doctors’ Inertia Is Powerful

Doctors seem reluctant to move patients off Humira. After years of struggling with insurance, the biggest concern of the patient and the rheumatologist, Snow said, is “forced switching by the insurer. If the patient is doing well, any change is concerning to them.” Still, the American College of Rheumatology recently distributed a video informing patients of the availability of biosimilars, and “the data is there that there’s virtually no difference,” Snow said. “We know the cost of health care is exploding. But at the same time, my job is to make my patient better. That trumps everything.”

“All things being equal, I like to keep the patient on the same drug,” said Madelaine Feldman, a New Orleans rheumatologist.

Gastrointestinal specialists, who often prescribe Humira for inflammatory bowel disease, seem similarly conflicted. American Gastroenterological Association spokesperson Rachel Shubert said the group’s policy guidance “opposes nonmedical switching” by an insurer, unless the decision is shared by provider and patient. But Siddharth Singh, chair of the group’s clinical guidelines committee, said he would not hesitate to switch a new patient to a biosimilar, although “these decisions are largely insurance-driven.”

HealthTrust, a company that procures drugs for about 2 million people, has had only five patients switch from Humira this year, said Cora Opsahl, director of the Service Employees International Union’s 32BJ Health Fund, a New York state plan that procures drugs through HealthTrust.

But the biosimilar companies hope to slowly gain market footholds. Companies like Coherus will have a niche and “they might be on the front end of a wave,” said Ciaccia, given employers’ growing demands for change in the system.

The $2,000 out-of-pocket cap on Medicare drug spending that goes into effect in 2025 under the Inflation Reduction Act could spur more interest in biosimilars. With insurers on the hook for more of a drug’s cost, they should be looking for cheaper options.

For Kaiser Permanente, the move to biosimilars was obvious once the company determined they were safe and effective, said Mary Beth Lang, KP’s chief pharmacy officer. The first Humira biosimilar, Amjevita, was 55% cheaper than the original drug, and she indicated that KP was paying even less since more drastically discounted biosimilars launched. Switched patients pay less for their medication than before, she said, and very few have tried to get back on Humira.

Prescryptive, a small PBM that promises transparent policies, switched 100% of its patients after most of the other biosimilars entered the market July 1 “with absolutely no interruption of therapy, no complaints, and no changes,” said Rich Lieblich, the company’s vice president for clinical services and industry relations.

AbbVie declined to respond to him with a competitive price, he said.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

The Host

Julie Rovner
KFF Health News

@jrovner

Read Julie's stories.

Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

Congress returns from its August recess with a long list of things to do and not a lot of time to do them. The fiscal year ends Sept. 30, and it’s possible that lawmakers will fail to finish work not only on the annual appropriations bills, but also on any short-term spending bill to keep the government open.

Meanwhile, Medicare has announced the first 10 drugs whose prices will be negotiated under the Inflation Reduction Act of 2022. Exactly how the program will work remains a question, however. Even how the process will begin is uncertain, as drugmakers and other groups have filed lawsuits to stop it.

This week’s panelists are Julie Rovner of KFF Health News, Rachel Cohrs of Stat, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, and Alice Miranda Ollstein of Politico.

Panelists

Rachel Cohrs
Stat News

@rachelcohrs

Read Rachel's stories

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's stories

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories

Among the takeaways from this week’s episode:

• Hard-line Republicans are refusing to back even a temporary government spending bill, suggesting a government shutdown looms — with repercussions for health programs. While the Senate and House have come to intra-chamber agreements on subjects like community health center funding or even have passed spending bills, Congress as a whole has been unable to broker an overarching deal.
• A coalition of House Republicans is falsely claiming that global HIV/AIDS funding through PEPFAR promotes abortion and is battling efforts to extend the program’s funding. PEPFAR is a bipartisan effort spearheaded by then-President George W. Bush and credited with saving millions of lives.
• The PEPFAR fight underscores the dysfunction of the current Congress, which is struggling to fund even a highly regarded, lifesaving program. Another example is the months-long blockade of military promotions by a freshman Republican senator, Alabama’s Tommy Tuberville, a member of the Senate Armed Services Committee. His objections over an abortion-related Pentagon policy have placed him at odds with top military leaders, who recently warned that his heavy-handed approach is weakening military readiness.
• The Biden administration recently announced new staffing requirements for nursing homes, as a way to get more nurses into such facilities. But how long will compliance take, considering ongoing nursing shortages? And the drug industry is reacting to the news of which 10 drugs will be up first for Medicare negotiation, with much left to be sorted out.
• In abortion news, a Texas effort to block patients seeking abortions from using the state’s roads is spreading town to town — and, despite being dubiously enforceable, it could still have a chilling effect.

Also this week, Rovner interviews Meena Seshamani, who leads the federal Medicare program, about the plan to start negotiating drug prices.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:

Julie Rovner: JAMA Health Forum’s “Health Systems and Social Services — A Bridge Too Far?” by Sherry Glied and Thomas D’Aunno.

Alice Miranda Ollstein: The Washington Post’s “Heat’s Hidden Risk,” by Shannon Osaka, Erin Patrick O’Connor, and John Muyskens.

Rachel Cohrs: The Wall Street Journal’s “How Novartis’s CEO Learned From His Mistakes and Got Help From an Unlikely Quarter,” by Jared S. Hopkins.

Joanne Kenen: Politico’s “How to Wage War on Conspiracy Theories,” by Joanne Kenen, and “Court Revives Doctors’ Lawsuit Saying FDA Overstepped Its Authority With Anti-Ivermectin Campaign,” by Kevin McGill.

Also mentioned in this week’s episode:

• The Washington Post’s “Highways Are the Next Antiabortion Target. One Texas Town Is Resisting,” by Caroline Kitchener.
• KFF Health News’ “Biden Administration Proposes New Standards to Boost Nursing Home Staffing,” by Jordan Rau.
• Stat’s “The Curious Case of J&J’s Stelara, The Unluckiest Drug on Medicare’s List,” by Rachel Cohrs.

Click to open the transcript

Transcript: Welcome Back, Congress. Now Get to Work.

[Editor’s note: This transcript, generated using transcription software, has been edited for style and clarity.]

Julie Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Sept. 7, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this. So here we go. We are joined today via video conference by Rachel Cohrs of Stat News.

Rachel Cohrs: Good morning.

Rovner: Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.

Joanne Kenen: Hi, everybody.

Rovner: And Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Hello.

Rovner: Later in this episode, we’ll have an interview with Meena Seshamani, who runs the Medicare program for the federal government, with an update on the Medicare drug negotiation debate as, we’ll discuss, the first 10 drugs that will be subject to negotiation were announced last week. But first, this week’s news. So Labor Day is behind us, and Congress is back — sort of. The Senate is back. The House returns next week. And there are lots of questions to be answered this fall, starting with whether or not Congress can finish the annual spending bills before the start of fiscal 2024 on Oct. 1. Spoiler: They cannot. But there’s also a real question whether Congress can even pass a short-term bill to keep the government running while lawmakers continue to work on the rest of the appropriations. As of now, what do you guys think are the odds that we’re going to end up with some kind of government shutdown at the end of the month?

Ollstein: Well, it’s whether it happens at the end of the month or at the end of the year, really. Folks seem pretty convinced that it will happen at some point. It could be short-lived. But, yeah, like you said, you have some hard-line House Republicans who say they won’t support even a temporary stopgap bill without spending cuts, policy changes, without sort of extracting some of their demands from leadership. And you could work around that in the House by cobbling together a coalition of Republicans and Democrats. But that also puts [House Speaker Kevin] McCarthy’s leadership in jeopardy. And so, we’re having sort of the same dynamic play out that we saw earlier this year, trying to navigate between the hard-line House Republicans and, you know, the more vulnerable swing districts’ members. So it’s … tough.

Rovner: Yeah, it’s the Republicans from districts that [President Joe] Biden won … basically.

Ollstein: Yeah. And so you have this weird game of chicken right now where both the House and Senate are trying to pass whatever they can to give themselves more leverage in the ultimate House-Senate negotiations. They think, OK, if we pass five bills and they only pass one, you know, then we have the upper hand. So we’ll see where that goes.

Rovner: It’s funny, because the Senate has been a well-oiled machine this year on the spending bills, which is unusual. I was about to say I will point out that there are two women: the chairman and ranking member. But that’s actually also true in the House. We do have women running the appropriations process this year. But I was amused that Kevin McCarthy, sometime during August, a couple of weeks ago, said, you know, very confidently, well, we’ll pass a short-term spending bill. You know, we won’t let the government shut down. And by the next day, the hard-line Republicans, the right wing, were saying, yeah, no you won’t. You’re going to have to deal with us first. And, obviously, there’s lots of health stuff that’s going to get caught up in that. The end of the fiscal year also marks the end of funding authority for a number of prominent programs. This is not the same as the appropriations programs whose authorizations lapse can continue, although things can get complicated. PEPFAR, the two-decade-old bipartisan program that provides AIDS and HIV prevention and treatment around the world, is one of those programs that, at least as of now, looks pretty stuck. Alice, is there any movement on this? We’ve talked about it before.

Ollstein: Not yet. So the latest we know, and we got this last night, is that [Foreign Relations Committee] Chairman [Bob] Menendez in the Senate is floating a new compromise. Basically, supporters of PEPFAR have been pushing for the full five-year standard reauthorization. And a coalition of House Republicans who are claiming that PEPFAR money is going to abortion say they want no reauthorization at all. They just want the program to sort of limp along through appropriations. So between five years and zero, Menendez is now suggesting a three-year extension. There is a huge desire not to just have the one-year funding patch because that would kick all of this into the heat of the 2024 season. And if you think the debate is ugly now over abortion and federal spending, just wait until 2024.

Kenen: I mean, this … [unintelligible] money … it’s saved tens of millions of lives — and with bipartisan support in the past.

Rovner: It was a Republican initiative.

Kenen: Right. It was President Bush, George the second.

Rovner: George W. Bush. Yeah.

Kenen: And they’re not saying they’re actually going out and using the AIDS dollars to conduct, to actually do abortions. They’re saying that there’s, you know, they’re in the world of abortion and they’re promoting abortion, etc., etc. So the conversation gets really, really, really, really muddled. Under U.S. law, they cannot use U.S. dollars for abortion under the Hyde Amendment, you know, all sorts of other foreign policy rules. So it’s hard to overstate how important this program has been, particularly in Africa. It has saved millions and millions of lives. And I think Alice might have broken the story originally, but it got caught up in abortion politics, and it caught people by surprise. This is not something … everything in Washington gets caught up in politics, except this! So I think it’s been quite shocking to people. And it’s, I mean — life-and-death sounds like a, you know, it’s a Washington cliché — this is life-and-death.

Ollstein: Yeah, absolutely. And, you know, even though the program won’t shut down if they don’t manage to get a reauthorization through, you know, I talked to people who run PEPFAR services in other countries, and they said that, you know, having this year-to-year funding and instability and uncertainty — you know, they won’t be able to hire, they won’t be able to do long-term planning. They said this will really undermine the goal to eliminate HIV transmission by 2030.

Cohrs: Oh, I actually did just want to jump in about another Sept. 30 deadline, because there was a big development this week. I know we were just talking about long-term planning. There is funding for community health centers that’s expiring at the end of September as well. DSH cuts could go into effect for hospitals. We do this routine every so often, but the House is actually more in step than the Senate on this issue; they released — at least Republicans released — a draft legislation, where all three committees of jurisdiction are in agreement about how to proceed. There are some transparency measures in there.

Rovner: The three committees in the House.

Cohrs: In the House. Yes, yes, we’re talking about the House. Yeah. So, they have reconciled their differences here and are hoping to go to the floor this month. So, I think they are out of the gate first, certainly with some sort of longer-term solution here. Again, could get punted. But I think it is a pretty big development when we’re talking about these extenders that the industry cares about very much.

Kenen: Congress is so polarized that it can’t even do the things that it agrees on. And we have seen this before where CHIP [Children’s Health Insurance Program] got caught up a few years ago. Community health clinics have gotten caught right in that same bill, right? But, you know, we really have this situation where it’s so dysfunctional they can’t even move fully on things that everybody likes. And community health centers date back to the early ’60s. However, they got a really big expansion, again, under second President Bush. And they’re popular, and they serve a need, and everybody likes them.

Rovner: They got a bigger expansion under the Affordable Care Act.

Kenen: Right, but they, you know — but I think that the Bush years was like the biggest in many years. And then they got more. So again, I mean, are they going to shut their doors? No. Is it going to be a mess? It is already a mess. They can’t — they don’t know what’s coming next. That’s no way to run a railroad or a health clinic.

Rovner: All right, well, one more while we’re on the subject of abortion-related delays: Alabama Sen. Tommy Tuberville is still blocking Senate approval of routine military promotions to protest the Biden administration’s policy of allowing funding for servicewomen and military dependents to travel for abortions if they’re posted to states where it’s banned. Now, the secretaries of the Army, Navy, and Air Force are joining together to warn that Tuberville’s hold is threatening military readiness. Tuberville apparently went on Fox News last night and said he’s got more people who are coming to support him. Is there any end to this standoff in sight? I mean, people seem to be getting kind of upset about it. It’s been going on since, what, February?

Ollstein: Yeah, there is not yet an end in sight. So far, all of the attempts to pressure Tuberville to back down have only hardened his resolve, it seems, you know, and he’s gone beyond sort of his original statement of, you know, all of this is just to get rid of this policy that doesn’t pay for abortions; it just allows people to travel out of state if they’re stationed — they don’t get to choose where they’re stationed — if they’re stationed somewhere where abortion is not legal or accessible. And so now he’s making claims about other things in the military he considers too woke. He’s criticized some of these individual nominees themselves that he’s blocking, which was not sort of part of the original stand he took. And so, it’s tough, and there isn’t enough floor time to move all of these and go around him. And so this pressure campaign doesn’t seem to be really making any headway. So I don’t really see how this gets resolved at this point.

Kenen: Except that other Republicans are getting a little bit more public. I mean, they were sort of letting him run out for a while. And there’s more Republicans who are clearly getting enough of this. But I mean, unless McConnell can really get him to move — and we don’t know what’s gone on behind closed doors, but we’re certainly not seeing any sign of movement. In fact, as Alice said, he’s digging in more. I mean, like, Marines and woke are not the two words you usually hear in one sentence, but in his worldview, they are. So, I think it’s unprecedented. I mean, I don’t think anyone’s ever done this. It’s not like one or two people. It’s like the entire U.S. military command can’t move ahead.

Rovner: I’ve been doing this a very long time, and I don’t remember anything quite like this. Well, the one thing that we do expect to happen this fall is legislation on — and Rachel, you were referring to this already — sort of health care price transparency and PBMs, the pharmacy benefit managers. Where are we with that? They were supposed to work on it over the August break. Did they?

Cohrs: They were supposed to work on it. The House was clearly working on it and reconciling some of their differences. They’re planning to introduce legislative text on Friday. So, I think Democrats aren’t on board yet, so things could change from the draft they had been circulating early this week. But again, Republicans don’t really need Democrats to move forward, at least in the House. The Senate has been pretty quiet so far. Not to say that no work has gone on, but they certainly weren’t ready for the rollout in the same way that the House was. You know, I think there are still some big questions about, you know, what they’re planning to accomplish with insulin policy, how they’re planning to fit together this jigsaw puzzle of PBM transparency and reforms that have come out of different committees. And I think it’ll come down to [Senate Majority Leader] Sen. Schumer making some tough choices. And from my understanding, that hasn’t quite happened yet. But if the actual showdown happens November, December, they still have some time.

Rovner: Yeah. Now they’re not going out early. They’re clearly going to be fighting over the appropriation. So, the legislative committees have plenty of time to work on these other things. All right. Well, let’s turn to Medicaid for a moment. The quote-unquote “unwinding” continues as states move to redetermine who remains eligible for the program and who doesn’t following the pandemic pause. As predicted, it’s been a bit of a bumpy road. And now it seems a bunch of states have been incorrectly dropping children from Medicaid coverage because their parents are no longer eligible. That’s a problem because nationwide, income limits for children’s eligibility is higher than parents’. In some states, it is much higher. I remember after Hurricane Katrina, in Louisiana, parents were only eligible if they earned 15% of poverty. Somebody said 50, and the Medicaid director said, “No, 15, one-five.” Whereas kids are eligible to, I believe it’s 200% of poverty. And I think that’s a national level.

Kenen: Now, in some states it’s higher.

Rovner: Yes. But I say this is happening in a bunch of states because federal government won’t tell us how many or which ones. We do know it’s more than a dozen, but this is the second time the administration has admonished states for wrongly canceling Medicaid coverage. And they wouldn’t say which states were involved at that time either. Is this an effort to keep this as apolitical as possible, given that the states most likely to be doing this are red states who are trying to remove ineligible people from Medicaid as fast as they can, that they’re trying to sort of keep this from becoming a Republican versus Democrat thing.

Ollstein: It seems like, from what we’re hearing, that the administration is really wary of publicly picking a fight with these states. They want the states to work with them. And so, even if the states are going about this in a way they think is totally wrong, they don’t want to just put them publicly on blast, because they think that’ll make them, again, double down and refuse to work with the government at all. And so, they’re trying to maintain some veneer of cooperation. But at the same time, you’re having, you know, millions of people, including children, falling through the cracks. And so, you know, we have sort of this sternly-worded-letter approach and we’ll see if that accomplishes anything, and if not, you know, what measures can be taken. You know, the administration also created a way for states to hit pause on the process and take a little more time and do a little more verification of people’s eligibility. And some — a couple states — have taken advantage of that, and it’s been successful in, you know, having fewer people dropped for paperwork reasons, but it’s not really happening in the states where it sort of most needs to happen, according to experts.

Rovner: The administration has had fingers pointed at it, too, because apparently it approved some of these plans from the states that were going to look at total family income without realizing that, oh, that meant that kids who are still eligible could end up losing coverage because their parents are no longer eligible.

Kenen: Right. And I also read something yesterday that in some cases it’s sort of a technical issue rather than a “how much outreach and what your intentions are,” that it’s a programing issue, which is related to what Julie just said about the plan. So, it’s not that these states set about to drop these kids, and there may be some kind of goodwill to fix it, in which case you don’t want to get in — and I don’t know that it’s 100% red states either. So —

Rovner: No, that’s clear. We assume, because they’re the ones going fastest, but we do not know.

Kenen: Right, so that there seems to be some kind of — the way it was set up, technically, that can be remedied. And if it’s a technical fix as opposed to an ideological fight, you don’t really want to — you want to figure out how to reprogram the computer or whatever it is they have to do and then go back and catch the people that were lost. So, they’ve been pretty low-key about politicizing rewinding in general. But on the kids, I think they’re going to be even more — CHIP passed, another thing with bipartisan support that’s a mess. I mean, it seems to be the theme of the day. But, you know, CHIP was created on a bipartisan basis, and it’s always been sustained on a bipartisan basis. So, I think that the issue, I don’t know how technically easy it is to fix, but there’s a big difference in how the administration goes after someone that’s intentionally doing something versus someone who wrote their computer programmer set something up wrong.

Rovner: Well, we will definitely keep on this one.

Kenen: But it’s a big mess. It’s a lot of kids.

Rovner: It is a big mess. And let’s turn to the thing that is not bipartisan in Congress, and that is —

Kenen: That’ll be a bigger mess.

Rovner: — Medicare drug negotiations. Yes. While we were away, the federal government released its much-anticipated list of the 10 brand-name drugs that will be the first tranche up for potential price negotiation. I say potential, because the companies have the option of negotiating or not — sort of — and because there are now, I think, nine lawsuits challenging the entire program. My interview with Medicare administrator Meena Seshamani will get into the nuts and bolts of how the negotiation program is supposed to work. But Rachel, tell us a little bit about the drugs on the list and how their makers are trying to cancel this entire enterprise before it even begins.

Cohrs: Sure. So, a lot of these drugs that we’re seeing on the list are blood thinners. Some are diabetes medications. There are drugs for heart failure, rheumatoid arthritis, Crohn’s disease, and there’s also a cancer treatment, too. But I think overall, the drugs were chosen because they have high cost to Medicare. And it was —

Rovner: So that either could mean a lot of people use an inexpensive drug —

Cohrs: Yes.

Rovner: — or a few people use a very expensive drug.

Cohrs: Correct. And it was Wall Street’s favorite parlor game to try to guess what drugs were going to be on this list of 10 drugs that are going to be the guinea pigs to go through this program for the very first time. But it was interesting, because there were a few surprises. Medicare officials were using newer data than Wall Street analysts had access to. So, there were a couple drugs, especially further down on the list, that people used more in the period CMS [Centers for Medicare & Medicaid Services] was studying than had been used previously. So, we saw a couple very interesting instances of a drug being chosen for the list, even though it just kind of fell through the cracks. It was J&J’s [Johnson & Johnson’s] Stelara. It’s a Crohn’s disease treatment, and it does have competition coming in the market soon, but just because of a fluke of kind of when it was approved by the FDA, it just missed cutoffs for some of these exemptions and is now subject to some pretty significant discounts through the program.

Rovner: We’ll link to your very sad story about Stelara.

Cohrs: Sad for the company, but not sad for the patients who will hopefully be paying less for this medication. And there’s also the case of Astellas [Pharma Inc.], which makes a prostate cancer drug that’s very expensive. A lot of people expected that to be selected, but actually wasn’t. And Astellas had sued the Biden administration already before the list came out and then had to withdraw their lawsuit yesterday because their argument that they were going to be harmed by this legislation was made much weaker by the fact that they weren’t selected for this first year of the program. So, who knows? They could dust off their arguments a year from now or two years from now. But it was interesting to see kind of some of these surprises on the list. Again, there are still several, like you mentioned, outstanding lawsuits in several different jurisdictions. I think the main one that we’re watching is by the [U.S.] Chamber of Commerce, which requested a preliminary injunction by the end of this month. So, we’ll see if that comes through. But it is a very long road to 2026. There might be a new administration by then. So, I think there are still a lot of questions about whether this reaches the finish line. But I think it’s a very important step for CMS to get this list out there in the world.

Rovner: So, I spent some time digging in my notes from earlier years, and I dug up notes from an interview I did on Aug. 26 with a spokesperson from the drug industry about how the Medicare drug benefit, quote, “impact the ability of companies to research new medicines. And if that happens, the elderly would be the ones hurt the most.” That quote, by the way, was from Aug. 26 of 1987. Some things truly never change. But is this maybe, possibly, the beginning of the end of drugmakers being able to charge whatever they want in the United States? Because it’s the only country where they can.

Cohrs: Oh, they can still charge whatever they want. This law doesn’t change that. It just changes the fact that Medicare won’t be paying whatever drugmakers happen to charge for an unlimited amount of time. Like, they can still charge whatever they want to Medicare for as long as they can get on the market before they’re selected for this negotiation program. But certainly there could be significant cost — significant savings to Medicare, even if those prices are high. And it’s just kind of a measure that forces price reductions, even if the generic or biosimilar market isn’t functioning to lower those prices through competition.

Kenen: Right. And it’s only Medicare. So, people who are not on Medicare — insurance companies also negotiate prices, but they’re not the government. It’s different. But I mean, these drugs are not going to start being, you know, three bucks.

Rovner: But they may stop being 300,000.

Kenen: Well, we don’t know, because there are some people who think that if Medicare is paying less, they’re going to charge everybody else more. We just don’t know. We don’t know what their behavior is going to be. But no, this does not solve the question of affordability of medication in the United States.

Rovner: The drug companies certainly think it’s the camel’s nose under the tent.

Kenen: They have some medicine for camels’ noses that they can charge a lot of money for, I’m sure.

Rovner: I bet they do. While we are on the subject of things that I have covered since the 1980s, last week the Biden administration finally put out its regulation requiring that nursing homes be staffed 24/7/365 by, you know, an actual nurse. One of the first big reconciliation bills I covered was in 1987 — that was a big year for health policy — and it completely overhauled federal regulation of nursing homes, except for mandating staffing standards, because the nursing homes said they couldn’t afford it. Basically, that same fight has been going on ever since. Except now the industry also says there aren’t enough nurses to hire, even if they could afford it. Yet patient advocates say these admittedly low staffing ratios that the Biden administration has put out are still not enough. So, what happens now? Is this going to be like the prescription drug industry, where they’re going to try to sue their way out of it? Or is it going to be more like the hospital transparency, where they’re just not going to do it and say, “Come and get us”?

Kenen: My suspicion is litigation, but it’s too soon to know. I assume that either one of the nursing home chains — because there are some very big corporations that own a lot of nursing homes — there are several nursing home trade industry groups, for-profit, nonprofit. Does one owner — is in an area where there is a workforce shortage, because that does exist. I mean, I’d be surprised if we don’t see some litigation, because when don’t we see that? I mean, it’s rare. That’s the norm in health care, is somebody sues. Some of the workforce issues are real, but also this proposal doesn’t go into effect tomorrow. It’s not like — but I mean, there are issues of the nursing workforce. There are issues about not just the number of nurses, but do we have them in the right places doing the right jobs? It’s not just RNs [registered nurses]; there are also shortages of other direct care workers. I did a story a few months ago on this, and there are actually nursing homes that have closed entire wings because they don’t have enough staff, and those are some of the nonprofits. There are nursing issues.

Rovner: And a lot of nursing home staff got sick at the beginning of the covid pandemic, and many of them died before there were good treatments. I mean, it’s always been a very hard and not very well-paid job to care for people in nursing homes. And then it became a not very pleasant, not very well-paid, and very deadly job. So I don’t think that’s probably helping the recruitment of people to work in nursing.

Kenen: Right, but the issue — I think a lot of people, when you have your first family experience with a nursing home or, you know, or those of us reporters who hadn’t been familiar with them until we went and did some stories on them, I think people are surprised at how little nursing there actually is. It’s nurses’ aides; it’s, you know, what they used to call licensed practical nurses or nursing assistants; and CNAs, certified nursing assistants. They’re various; different states have different names. But these are not four-year RNs. The amount of actual nursing — forget doctors. I mean, there’s just not a lot of RNs in nursing homes. There’s not a lot of doctors who spend time in nursing homes. A lot of the care is done through people with less training. So, this is trying to get more nurses in nursing homes. And there’s been a lot of stories about inadequate care. KFF Health News — I think it was Jordan Rau who did them. There have been some good stories about particularly nights and weekends, just really nobody there. These are fragile people. And they wouldn’t be in a nursing home if they weren’t fragile people. There are a lot of horror stories. At the same time, there are some legitimate — How fast can you do this? And how well can you do it? And can you do it across the country? I mean, it’s going to take some working out, but I don’t think anybody thinks that nursing home care in this country is, you know, a paragon of what we want our elders to experience.

Rovner: And the nursing home industry points out, truthfully, that most nursing home payments now come from Medicaid, because even people who start out being able to afford it themselves often run out of money and then they end up — then they qualify for Medicaid. And Medicaid in many states doesn’t pay very much, doesn’t pay nursing homes very much. So it’s hard for these companies. We’re not even talking about the private equity companies. A lot of nursing homes operate on the financial edge. I mean, there are —our long-term care policy in this country is, you know, just: What happens, happens, and we’ll worry about it later. And this has been going on for 50 years. And now we have baby boomers retiring and getting older and needing nursing home care. And at some point, this is all going to come to a head. All right. Well, let us turn to abortion. This week marks the second anniversary of the Texas abortion ban, the so-called heartbeat bill, that bans most abortion and lets individuals sue other individuals for helping anyone getting an abortion, which the Supreme Court, if you’ll recall, allowed to take effect months before it formally overturned Roe v. Wade. And, I guess not surprisingly, Texas is still in the news about abortion. This time. The same people who brought us Texas SB 8, which is the heartbeat bill, are going town by town and trying to pass ordinances that make it illegal to use roads within that town’s borders to help anyone obtain an abortion. They’re calling it abortion “trafficking.” Now, it’s not only not clear to me whether a local ordinance can even impact a state or an interstate highway, which is what these laws are mostly aimed at; but how on earth would you enforce something like this, even if you want to?

Ollstein: So, my impression is that they do not want to. These are not meant to be practical. They are not meant to be enforced, because how would you do it other than implementing a very totalitarian checkpoint system? This is meant to —

Rovner: Yes, have you been drinking and are you on your way to get an abortion?

Ollstein: Right. Right, right, right. So, it seems like the main purpose is to have a chilling effect, which it very well could have, even if it doesn’t stand up in court. You know, you also have this situation that we’ve had play out in other ways, where people are challenging laws in courts for having a chilling effect, and courts are saying, look, you have to wait till you actually get prosecuted and challenge it, you know, do an as-applied challenge. If you can’t challenge unless there’s a prosecution but there’s no prosecutions, then you sort of just have it hanging over your head like a cloud.

Kenen: Like Alice said, there’s no way you could do this. Like, what do you do, stop every car and give every person a pregnancy test? Are you going to, like, have, you know, ultrasounds on the E-ZPass monitors? Like, you go through it, it checks your uterus. So, I mean, it’s just not — you can’t do this. But I think one of the things that was really interesting in one of the stories I read about it, I think it was in The Washington Post, was that when they interviewed people about it, they thought it was trafficking, like really trafficking, that there were pregnant woman being kidnapped and forced to have an abortion. So even if you’re pro-choice, you might say, “Oh, I’m against abortion trafficking. I mean, I don’t want anyone to be forced to have an abortion.” You know, so, it’s — the wording and the whole design of it is, they know what they’re doing. I mean, they want to create this confusion. They want to create a disincentive. There’s no way — you know, radar guns? I mean, it’s just, there’s no way of doing this. But it is part of the effort to clamp down even further on a state that has already really, really, really clamped down.

Rovner: Although, I mean, if one could sue and if one could then know about something that’s happening and then you could presumably take the person to court and say, I know you were pregnant and now you’re not, and somebody took you in a car to New Mexico or whatever …

Kenen: You can’t even prove — how do you prove that it wasn’t a miscarriage?

Rovner: That’s —

Kenen: Right? I mean …

Rovner: I’m not saying — I’m not talking about the burden of proof. I’m just saying in theory, somebody could try to have a case here. I mean, but we certainly know that Texas has done a very good job creating a chilling effect, because we still have this lawsuit from the women who were not seeking abortions, who had pregnancy complications and were unable to get health-saving and, in some cases, lifesaving care promptly. And that’s still being litigated. But meanwhile, we have, you know, just today a study out from the Guttmacher Institute that showed that despite how well these states that are banning abortion have done in banning abortion, there were presumably more abortions in the first half of 2023 than there were before these bans took effect, because women from ban states were going to states where it is not banned. And there has been, ironically, better access in those states where it is not banned. I can’t imagine that this is going to please the anti-abortion community. One would think it would make them double down, wouldn’t it?

Ollstein: We know that people are leaving their states to obtain an abortion. We also know that that’s not an option for a lot of people, and not just because a lot of people can’t afford it or they can’t take time off work, they can’t get child care — tons of reasons why somebody might not be able to travel out of state. They have a disability, they’re undocumented. We also have — it’s become easier and easier and easier to obtain abortion pills online through, you know, a variety of ways: individual doctors in more progressive states, big online pharmacies are engaged in this, overseas activist groups are engaged in this. And so, you know, that’s also become an option for a lot of people. And anti-abortion groups know that those are the two main methods. People are still continuing to have abortions. And so, they’re continuing to just throw out different ways to try to either, you know, deter people or actually block them from either of those paths.

Rovner: This fight will also continue on. So, that is this week’s news. Now we will play my interview with Meena Seshamani, and then we will come back and do our extra credits.

Hey, “What the Health?” listeners, you already know that few things in health care are ever simple. So, if you like our show, I recommend you also listen to “Tradeoffs,” a podcast that goes even deeper into our costly, complicated, and often counterintuitive health care system. Hosted by longtime health care journalist and friend Dan Gorenstein, “Tradeoffs” digs into the evidence and research data behind health care policies and tells the stories of real people impacted by decisions made in C-suites, doctors’ offices, and even Congress. Subscribe wherever you listen to your podcasts.

I am pleased to welcome back to the podcast Dr. Meena Seshamani, deputy administrator and director of the Center for Medicare at the Centers for Medicare & Medicaid Services. Meena was with us to talk generally about Medicare’s new prescription drug negotiation program earlier this summer. But now that the first 10 drugs subject to negotiation have been announced, we’re pleased to have her back. Welcome.

Meena Seshamani: Thank you for having me.

Rovner: So, remind our listeners, why hasn’t Medicare been able to negotiate drug prices until now — they negotiate prices of everything else — and what changed to make that happen?

Seshamani: That’s right. It was because of the Medicare law that Medicare did not have the ability to negotiate drugs. And thanks to the new drug law, the Inflation Reduction Act, now Medicare has the ability to negotiate the prices of the highest-cost drugs that don’t have competition. And that is part of the announcement that we had on what the first 10 drugs are that have been selected.

Rovner: So, as you say, last week, for the first time and in time for the Sept. 1 deadline, Medicare announced the list of the first 10 drugs that will be part of the first round of price negotiations. Why these 10 specifically? I imagine it’s not a coincidence that the list includes some of the drugs whose ads we see the most often on TV: drugs like Eliquis, Xarelto, and Jardiance, which I of course know how to pronounce because I see the ads all the time.

Seshamani: Well, the process of selection really was laid out in the drug law and also through the guidance that we put out that we had incorporated everybody’s comment for. So, what we did is we started with the, you know, over 7,500 drugs that are covered in the Part D Medicare prescription drug program. From there, we picked those drugs that had been on the market for seven years for a drug product or 11 years for a larger molecule or biologic product that did not have competition. And then from there, there are various exemptions and exclusions that, again, are laid out in the law: for example, drugs that have low Medicare spend, of less than $200 million; drugs that are plasma-derived products; certain orphan drugs. An orphan drug is a drug that is indicated for a rarer disease. So that, again, those specific criteria are laid out in the law and in our guidance. And then there were opportunities for manufacturers to apply, for example, for a small biotech exemption; if their drug was, you know, 80% of their, you know, Medicare Part D revenue, they could say, “Hey, I’m a small biotech.” Again, a lot of these criteria were laid out in the law. Or for a manufacturer of a biosimilar, which is kind of like a generic drug for one of these biologic drugs, they could say, “Hey, we have a biosimilar that’s going to be coming on the market, has a high likelihood of coming on the market, so you should delay negotiating” the brand, if you will, drug. So, again, all of these steps were laid out in the drug law, and those are the steps and criteria that we followed that came to that list of 10 drugs that we published.

Rovner: I did see the makers of one drug — and forgive me, I can’t remember which one it was — saying, “But our drug isn’t that expensive.” On the other hand, their drug is used by a lot of people on Medicare. So, it’s not just the list price of the drug, right? It’s how much it costs Medicare overall.

Seshamani: That’s right. The list is made up of those drugs that have the highest gross total cost to the program — so, price per unit times units of volume that is used.

Rovner: So, how does this negotiation process work? What happens now? Now we have this list of 10 drugs.

Seshamani: Yeah, a lot of this is also laid out in the law, and then we fleshed out further in our guidance. So, from the list of 10 drugs, on Oct. 1, manufacturers now have to decide if they want to participate in the negotiation program. It is a voluntary program. It is our hope that they will come to the table and want to negotiate, because I think we all have shared goals of improving access and affordability and really driving innovation for the cures and therapies that people need. So, Oct. 1, they sign agreements for the negotiation program if they decide to participate. And Oct. 2 is the deadline for gathering data. We put out what’s called an information collection request to say, this is the kind of data we’re thinking about collecting. We got lots of comments and incorporated that. So, that provides the framework for the data that we’re requesting both from the manufacturer of the selected drug, but also, there are aspects open to the public on, you know, how the drug benefits populations, for example. So that’s Oct. 2. Then we’re going to have patient-focused listening sessions, a session for each drug, for patients, their caregivers, you know, other advocates, to be able to share what they see as the benefits of the drugs that are selected. And, we will have meetings with each of the manufacturers. All of that information will come together in an initial offer that CMS will make Feb. 1, 2024, and that is a date that is stipulated in the law. The manufacturer then has about 30 days to evaluate that. If they like that offer, they can agree. If they want, they can make a counteroffer. From that counteroffer, CMS has the ability to agree or to say, “You know, we don’t agree, so let’s now have a series of negotiation meetings.” There can be up to three negotiation meetings that provides that back-and-forth, ultimately leading to an agreed-upon what’s called maximum fair price in the law. And those maximum fair prices are published by Sept. 1, 2024. Again, that Sept. 1 is stipulated in the law. And also as part of this process, CMS will publish a narrative about that negotiation process — you know, the data that was received, you know, the back-and-forth, and also we’ll publish ultimately the maximum fair prices that are agreed to.

Rovner: And does that maximum fair price just apply to Medicare?

Seshamani: The maximum fair price just applies to Medicare. The information will be available. I mean, we don’t have any authority. You know, the commercial sector, they do their own negotiations, and they will continue to do so. But part of this is an opportunity to really further the conversation about how drugs impact the lives of people. We have an opportunity now with some drugs that have been on the market for quite a while, right? Minimum of seven years or 11 years, to see how these drugs work in the real world, in people’s communities, so that we can incorporate that into what it is that we need and want for people to be healthy, to stay out of the hospital, to live meaningful lives. So it’s really an opportunity to further that conversation. And a lot of that data, a lot of those listening sessions, that will all go into our negotiation process and will be part of the narrative that we publish.

Rovner: And what happens if the drug company says either we don’t want to negotiate or we don’t like our final offer? If they say they don’t want to play, what happens?

Seshamani: Julie, I will say again, to start with, we are hopeful that the drug companies will come forward and will want to negotiate because, again, through many conversations that we have had, we do have shared goals of access and affordability and really driving innovation and procures and therapies that people need. And it is a choice for drug companies if they want to participate or not, as stipulated in the law. If a drug company decides not to sign, you know, the negotiation agreement, not to participate in negotiation, then we would refer them to the Department of Treasury for an excise tax. That excise tax is also described in the law. If a drug company has this excise tax applied, they can get out of paying the excise tax. If, No. 1, they decide to come to the table and negotiate, or No. 2, if they exit the Medicare and Medicaid market. So those are kind of their off-ramps, if you will, for that excise tax.

Rovner: So they don’t have to participate in the negotiation, but they also don’t have to participate in Medicare and Medicaid.

Seshamani: Correct.

Rovner: So I saw a lot of complaining last week with the first group of drugs that this is really only going to benefit the people on Medicare who take those drugs. But, in fact, if there really is a lot of money saved, the benefits could go well beyond this, right?

Seshamani: Yeah, I think two points. So, yes, this negotiation is for, you know, some of the highest-cost drugs to the Medicare program that don’t have competition. And the negotiated drug prices apply to the Medicare program. However, as we talked about, this really drives a conversation around drugs and really grounding this negotiation process in the clinical benefit that a drug provides. Considering things like if a drug is easier for someone to take and it’s easier for a caregiver, that can have tangible improvements to the health of the person they’re caring for, right? And I think we have that opportunity to really drive the conversation. And as we know in many aspects of health care, people look to Medicare to see what Medicare is doing. And also, the transparency around providing that narrative of the negotiation, publishing the maximum fair prices that are agreed to. That’s all data that anybody can use as they would like. And I think the second piece that’s important to remember is that negotiation is one very important piece of a very big change to Medicare prescription drug coverage. You know, alongside the $2,000 out-of-pocket tab that’s going to go into effect in 2025, the no-cost vaccines, $35 copay cap for insulin that have already gone into effect. So, really, it is part of a larger sea change in Medicare drug coverage that will help millions of people and their families. You know, I did a roundtable with seniors as we were rolling out the insulin copay cap. And one woman was telling me that she was providing money to her brother every month so that he could pay for his insulin on Medicare. So, really, I mean, this has tremendous impact not just for people on Medicare, but their families, their communities, and really furthers the conversation for the entire system.

Rovner: I was actually thinking of more nitty-gritty money, which is if you save money for Medicare, premiums will be lower for people who are getting drug coverage, and taxpayers will save money, too, right? I mean, this is not just for these people and their families.

Seshamani: Our priority is being able to reach agreement on a fair price for the people who rely on these medications for their lives and the American taxpayer in the Medicare program.

Rovner: I know you can’t comment on lawsuits, and there are many lawsuits already challenging this. But the drug companies, one of their major arguments is that if you limit what they can charge for their drugs, particularly in the United States, the last country where they can charge whatever they want for their drugs, they will not be able to afford to keep the pipeline going to discover more new, important drugs. This is an argument they’ve been making since, I told somebody earlier, since I covered this in the late 1980s. What is your response just to that argument?

Seshamani: Well, I think there were several articles, many articles were written about this on the day that the 10 selected drugs were published. They were published before the stock market opened. And there really was no impact on the stocks of the companies. There were many financial pieces written about this. So I think that is one indication of the fact that the pharmaceutical industry is strong, it is thriving, and it is designed to innovate. And what we’re hoping to do through this negotiation program is really reward the kinds of innovations that we all need, the cures and therapies that people need. Recently, the venture fund that backed Moderna invested in a new startup for small molecules. Bayer has recently invested a billion dollars in the U.S. So you see, the industry very much is thriving. That is what the stock market response also shows. And it’s also the way that we are approaching negotiation to make sure that we’re rewarding the kinds of innovations that people need.

Rovner: Well, Meena Seshamani, thank you so much. I hope we can come back to you as this negotiation process for the first time proceeds.

Seshamani: Absolutely. Thanks again, Julie.

Rovner: OK. We are back, and it’s time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Alice, why don’t you go first this week?

Ollstein: Yeah, I picked a very sad story from The Washington Post about how people who have schizophrenia are a lot more vulnerable to extreme heat. And it’s rare to find one of these health care stories where you’re just astonished. You know, I had no idea about this. You know, it really walks through not only are people more vulnerable for mental health reasons, you know, it profiles this terrible story of a guy in Phoenix who wandered off into the desert and died because he was experiencing paranoid delusions. But also, just physically, people with schizophrenia have difficulty regulating their body temperature. A lot of medications people take make people more dehydrated, less able to cope. And just an astonishingly high percentage of people hospitalized and killed by extreme heat have these mental illnesses. Of course, they’re also more likely to have housing instability or be out on the street. So just a fascinating piece, and I hope it spurs cities to think of ways to address it. One other small thing I want to compliment is it just, technically, on this article online, they have a little widget where you can convert all of the temperatures cited in the lengthy story from Fahrenheit to Celsius. And I just really appreciated that for allowing, you know, no matter where you live, you sort of get what these high temperatures mean.

Rovner: Yeah, graphics can be really helpful sometimes. Rachel.

Cohrs: Yeah. So I chose a story in The Wall Street Journal and the headline is “How Novartis’s CEO Learned From His Mistakes and Got Help From an Unlikely Quarter,” by Jared S. Hopkins. And I think it was a really interesting and rare look inside one of these pharmaceutical companies. And Novartis hired a Wall Street analyst, Ronny Gal, to help advise them. And I think I had read his analysis before he crossed over to Novartis. So I think it was interesting to just hear how that has integrated into Novartis’ strategy and just how they’re changing their business. But I think as we’re, you know, having these conversations about drug pricing and how strategies are changing due to some of these policies, it is helpful to look at who these executives are listening to and what they’re prioritizing, whose voices in this decision-making process that really has impacts for so many people who are waiting for treatments. And I think there are tough choices that are made all the time. So I just thought it was very illuminating and helpful as we’re talking about how medicines get made in D.C.

Rovner: Yeah, maybe there will be a little more transparency to actually how the drug industry works. We will see. Joanne.

Kenen: With Julie’s permission, I have two that are both short and related. I wrote a piece for Politico Nightly called “How to Wage War on Conspiracy Theories,” and I liked it because it really linked political trends and disinformation and attempts to debunk, with very parallel things going on in the world of health care and efforts to the motivations and efforts to sow trust and what we do and do not know about how to debunk, which we’re not very good at yet. And then the classic example, of course, is the related AP story, which has a very long headline, so bear with me. It’s by Kevin McGill: “Court Revives Doctors’ Lawsuit Saying FDA Overstepped Its Authority With Anti-Ivermectin Campaign.” And, basically, it’s that the 5th Circuit, a conservative court that we’ve talked about before, is saying that the FDA is allowed to inform doctors, but it can’t advise doctors. And I’m not really sure what the difference is there, because if the FDA is informing doctors that ivermectin, we now know, does not work against covid, and it can in fact harm people, there’s ample data, that the FDA is not allowed to tell doctors not to use it. So the ivermectin campaign is a form of disinformation, or misinformation, whatever you want to call it, that at the very beginning, people had, you know, there were some test-tube experiments. We had nothing else. You can sort of see why people wanted … might have wanted to try it. But we have lots and lots and lots of good solid clinical research and human beings and, no, it does not cure covid. It does not improve covid. And it can be damaging. It’s for parasites, not viruses.

Rovner: It can cure worms. Well, I’m going to channel my inner Margot Sanger-Katz this week and choose a story from a medical journal, in this case the Journal of the American Medical Association. Its lead author is Sherry Glied, who’s dean of the NYU Robert F. Wagner Graduate School of Public Service and former assistant HHS [Department of Health and Human Services] secretary for planning and evaluation during the Obama administration — and I daresay one of the most respected health policy analysts anywhere. The piece is called “Health Systems and Social Services — A Bridge Too Far?” And it’s the first article I’ve seen that really does question whether what’s become dogma in health policy over the past decade that — tending to what are called social determinants of health, things like housing, education, and nutrition — can improve health as much as medical care can. Rather, argues Glied, quote, “There are fundamental mismatches between the priorities and capabilities of hospitals and health systems and the task of addressing social determinants of health,” and that, basically, medical providers should leave social services to those who are professional social service providers. That is obviously a gross oversimplification of the argument of the piece, however, but I found it really thought-provoking and really, for the first time, someone saying, maybe we shouldn’t be spending all of this health care money on social determinants of health. Maybe we should let social service money go to the social service determinants of health. Anyway, we will see if this is the start of a trend or just sort of one outlier voice. OK, that is our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks, as always, to our amazing engineer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me, or X me, or whatever. I’m still there @jrovner, also on Bluesky and Threads. Rachel?

Cohrs: I’m @rachelcohrs on X.

Rovner: Alice.

Ollstein: @AliceOllstein.

Rovner: Joanne.

Kenen: @JoanneKenen on Twitter, @joannekenen1 on Threads.

Rovner: We will be back in your feed next week. Until then, be healthy.

Credits

Francis Ying
Audio producer

Emmarie Huetteman
Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

Shementé Jones knew something wasn’t right. Her back hurt. She felt pain during sex.

She said she kept telling her doctor something was wrong.

Her doctor told her, “Just wash your underwear in Dreft,” Jones said, referring to a brand of detergent.

Within months of that 2016 appointment, Jones, who lives in a suburb of Jackson, Mississippi, was diagnosed with stage 3 cervical cancer. She underwent a hysterectomy then weeks of radiation therapy.

“I ended up fine,” said Jones, now 43. “But what about all the other women?”

The question is especially pertinent in Jones’ home state, which had the nation’s second-highest age-adjusted cervical cancer mortality rate, 3.4 deaths per 100,000 women and girls annually from 2016 through 2020, behind only Oklahoma, according to National Cancer Institute data. And, for non-Hispanic Black women such as Jones, the rates in the state are even higher — 3.7 deaths per 100,000 people. This all translates to about 50 avoidable deaths of Mississippi women from cervical cancer each year in this largely rural state.

Health care experts said such a high death rate from a cancer that is preventable, detectable, and successfully treatable when found early is a warning sign about the general state of health care in Mississippi.

“They desperately need help there,” said Otis Brawley, a professor of oncology at Johns Hopkins School of Medicine and an expert on health disparities. “Political leadership is incredibly important in turning this around, and in Mississippi, the political leadership don’t give a damn.”

Despite the beauty of Mississippi, from the rolling hills of the Natchez Trace to white-sand beaches on the Gulf of Mexico, and the cultural renown of its famous musicians and storytellers, the state’s reputation is marred by its high rates of poverty. People who live there are accustomed to being the butt of jokes, but it hurts.

“Often Mississippi gets represented poorly,” said Mildred Ridgway, an OB-GYN at the University of Mississippi Medical Center in Jackson.

Recently the state has reeled from crisis after crisis. As recently as March, tornadoes and other severe weather killed more than two dozen people and caused extensive damage. Last year, the water in Jackson, the state capital, was undrinkable for months because of treatment plant failures.

On just about any measure of health, Mississippi ranks near or at the bottom. Nationally, an estimated 10% of people under 65 lack health insurance, but in Mississippi it is about 14%. Deaths from cardiovascular disease, diabetes, cancer, and many other illnesses are among the highest per capita in the country.

The high rates of poverty contribute to the high cervical cancer mortality, health experts said. About 19% of Mississippians — nearly 1 in 5 — live in poverty, while nationally it is about 13%.

“If I had to pinpoint what that’s from, it’s from lack of education,” said Ridgway, referring to a lack of knowledge about regular cervical cancer screening, which the U.S. Preventive Services Task Force recommends every three years for women 21 to 65.

But it likely goes far beyond that, many health experts said. Doctors may be less likely to stress preventive care to less educated women and women of color, studies suggest.

“There’s a big difference in the quality of care,” said Rajesh Balkrishnan, a professor of public health at the University of Virginia who has extensively studied oncology care in Appalachia and other underserved areas.

In her case, Jones said, she could not get her doctor’s office to return her calls in a timely manner. She was concerned about her symptoms.

“I felt I wasn’t listened to. I called her more than she called me,” Jones said of her doctor. “I was going to my appointments, and I was ignored.”

And getting access to any care — let alone quality, culturally competent care from providers who acknowledge a patient’s heritage, beliefs, and values during treatment — may be difficult.

Most of the state’s 82 counties are rural. The average travel distance to a grocery store is 30 miles, and half the population lives in a county that is considered medically underserved, said Letitia Thompson, a vice president in Mississippi for the American Cancer Society.

Low-income rural residents often lack reliable transportation, she said, and even if they own a vehicle, they lack gas money. They often can’t find — or pay for — someone to take care of their children so they can go to the doctor. Women with low-paying jobs often lack the time to drive to a clinic in a distant town, or the ability to take off from work without losing pay.

“Women who work and take care of children often have a huge burden of responsibility,” Ridgway said. “They don’t have time or the money.”

Many also don’t have insurance. While the Affordable Care Act has lowered the uninsured rate in Mississippi, an estimated additional 88,000 Mississippians could have coverage through Medicaid if the state expanded eligibility for the federal-state insurance program for low-income Americans. But the state is one of 10 that have not agreed to expand coverage to more adults.

Mississippi Gov. Tate Reeves, a Republican up for reelection this year, is opposed to expansion. His Democratic challenger, Brandon Presley, a second cousin of the music legend Elvis, favors it. Polls show Presley lagging Reeves.

Without expansion of Medicaid, people who have low incomes are often left to decide between forgoing insurance and purchasing a policy through the Affordable Care Act marketplace if they cannot get insurance through employment. Even if they qualify for subsidized marketplace plans, they may face high deductibles or copayments for visits, health experts said. That often means going to the doctor only when sick. Preventive care becomes a luxury.

“You save your health care dollars for when you are sick or your kids are sick,” said Thompson, of the American Cancer Society.

But regular medical care can make all the difference with cervical cancer. Pap tests have long helped detect abnormal cervical cells that could turn malignant. Brawley said the test is “one of the best” cancer screening tests because of its accuracy.

In 2006, vaccines to prevent cervical cancer were first approved by the FDA. The vaccines guard against the common sexually transmitted infection called the human papillomavirus, which causes nearly all cervical cancers. The HPV vaccine is most effective when administered before a person has become sexually active; the federal recommendation is to get the shots by age 12.

Only a handful of places in the U.S. — including Hawaii, Rhode Island, Virginia, Puerto Rico, and the District of Columbia — require the vaccines to attend school. California has pending legislation that initially would have required that middle schoolers get the shots, but the bill has since been watered down to recommend them instead.

Mississippi does not require the vaccine, and the state has had the lowest share of fully vaccinated teens by a large margin for years. Fewer than 39% of teens there were up to date on HPV vaccination as of 2022, according to the CDC, compared with an estimated 63% nationally.

Thompson said she thinks many parents are hesitant to have their children vaccinated because they believe it would encourage sexual activity.

“This is an anti-cancer vaccine,” Thompson said.

Krista Guynes, director of the women’s health program at the Mississippi State Department of Health, said the state has several efforts underway to better inform women about the need for screening. It also has clinics for uninsured women. In partnership with the National Cancer Institute and University of Mississippi Medical Center, she said, the health department is conducting a study to evaluate risk and look for new biomarkers in women undergoing screening for cervical cancer.

As for Jones, she considers herself lucky to have survived stage 3 cancer.

“I would just like to say to every woman, ‘Get the vaccine.’ The vaccine will make the difference, so they won’t have to be told, ‘I’m sorry, you have cancer.’”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

But a research study the Centers for Medicare & Medicaid Services commissioned to identify the appropriate level of staffing made no specific recommendations and analyzed only staffing levels lower than what the previous major federal evaluation had considered best, according to a copy of the study reviewed Monday by KFF Health News. Instead, the new study said there was no single staffing level that would guarantee quality care, although the report estimated that higher staffing levels would lead to fewer hospitalizations and emergency room visits, faster care, and fewer failures to provide care.

Patient advocates said the report was the latest sign that the administration would fall short of its pledge to establish robust staffing levels to protect the 1.2 million Americans in skilled nursing facilities. Already, the administration is six months behind its self-imposed deadline of February to propose new rules. Those proposals, which have not been released, have been under evaluation since May by the Office of Management and Budget. The study, dated June 2023, has not been formally released either, but a copy was posted on the CMS website. It was taken down shortly after KFF Health News published this article.

“It’s honestly heartbreaking,” said Richard Mollot, executive director of the Long Term Care Community Coalition, a nonprofit that advocates for nursing home patients in New York state. “I just don’t see how this doesn’t ultimately put more residents at risk of neglect and abuse. Putting the government’s imprimatur on a standard that is patently unsafe is going to make it much more difficult for surveyors to hold facilities accountable for the harm caused by understaffing nursing homes.”

For months, the nursing home industry has been lobbying strenuously against a uniform ratio of patients to nurses and aides. “What is clear as you look across the country is every nursing home is unique and a one-size-fits-all approach does not work,” said Holly Harmon, senior vice president of quality, regulatory, and clinical services at the American Health Care Association, an industry trade group.

Nursing home groups have emphasized the widespread difficulty in finding workers willing to fill existing certified nursing assistant jobs, which are often grueling and pay less than what workers can make at retail stores. Homes say their licensed nurses are often drawn away by other jobs, such as better-paying hospital positions. “The workforce challenges are real,” said Katie Smith Sloan, president and CEO of LeadingAge, an association that represents nonprofit nursing homes.

The industry has also argued that if the government wants it to hire more workers it needs to increase the payments it makes through state Medicaid programs, which are the largest payor for nursing home care. Advocates and some researchers have argued that nursing homes, particularly for-profit ones, can afford to pay employees more and hire additional staff if they forsake some of the profits they give investors.

“Certainly, facilities haven’t put all the dollars back into direct care over the years,” said David Grabowski, a professor of health care policy at Harvard Medical School. “But for certain facilities, it’s going to be a big lift to pay for” higher staffing levels, he said in an interview last week.

In a written statement to KFF Health News, Jonathan Blum, CMS’ principal deputy administrator and chief operating officer, said the study had been posted in error. “CMS is committed to holding nursing homes accountable for protecting the health and safety of all residents, and adequate staffing is critical to this effort,” he said. “CMS’s proposal is being developed using a rigorous process that draws on a wide range of source information, including extensive input from residents and their families, workers, administrators, experts, and other stakeholders. Our focus is on advancing implementable solutions that promote safe, quality care for residents.” Blum’s statement called the study a “draft,” although nothing in the 478-page study indicated it was preliminary.

The study has been widely anticipated, both because of the central role the administration said it would play in its policy and because the last major CMS study, conducted in 2001, had concluded that nursing home care improves as staffing increases up to the level of about one worker for every six residents. The formal metric for that staffing level was 4.1 staff hours per resident per day, which is calculated by dividing the number of total hours worked by nurses and aides on duty daily by the number of residents present each day.

CMS never adopted that staffing ratio and instead gave each nursing home discretion to determine a reasonable staffing level. Regulators rarely cite nursing homes for insufficient staffing, even though independent researchers have concluded low staffing is the root of many nursing home injuries. Too few nurse aides, for instance, often means immobile residents are not repositioned in bed, causing bedsores that can lead to infection. Low staffing also is often responsible for indignities residents face, such as being left in soiled bedsheets for hours.

The new research was conducted by Abt Associates, a regular contractor for CMS that also performed the 2001 study. But the report, in an implicit disagreement with its predecessor, concluded there was “no obvious plateau at which quality and safety are maximized or ‘cliff’ below which quality and safety steeply decline.” Abt referred questions about the study to CMS.

The study evaluated four minimum staffing levels, all of which were below the 4.1 daily staff hours that the prior study had identified as ideal. The highest was 3.88 daily staff hours. At that level, the study estimated 0.6% of residents would get delayed care and 0.002% would not get needed care. It also said that staffing level would result in 12,100 fewer hospitalizations of Medicare residents and 14,800 fewer emergency room visits. The report said three-quarters of nursing homes would need to add staff to meet that level and that it would cost $5.3 billion extra each year.

The lowest staffing level the report analyzed was 3.3 daily staffing hours. At that level, the report said, 3.3% of residents would get delayed care and 0.04% would not get needed care. That level would reduce hospitalizations of Medicare residents by 5,800 and lead to 4,500 fewer emergency room visits. More than half of nursing homes would have to increase staff levels to meet that ratio, the report said, and it would cost $1.5 billion more each year.

Charlene Harrington, a professor emeritus of nursing at the University of California-San Francisco, said CMS “sabotaged” the push for sufficiently high staffing through the instructions it gave its contractor. “Every threshold they looked at was below 4.1,” she said. “How can that possibly be a decent study? It’s just unacceptable.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

America’s pharmaceutical giants are suing this summer to block the federal government’s first effort at drug price regulation.

Last year’s Inflation Reduction Act included what on its face seems a modest proposal: The federal government would for the first time be empowered to negotiate prices Medicare pays for drugs — but only for 10 very expensive medicines beginning in 2026 (an additional 15 in 2027 and 2028, with more added in later years). Another provision would require manufacturers to pay rebates to Medicare for drug prices that increased faster than inflation.

Those provisions alone could reduce the federal deficit by $237 billion over 10 years, the Congressional Budget Office has calculated. That enormous savings would come from tamping down drug prices, which are costing an average of 3.44 times — sometimes 10 times — what the same brand-name drugs cost in other developed countries, where governments already negotiate prices.

These small steps were an attempt to rein in the only significant type of Medicare health spending — the cost of prescription drugs — that has not been controlled or limited by the government. But they were a call to arms for the pharmaceutical industry in a battle it assumed it had won: When Congress passed the Medicare prescription drug coverage benefit (Part D) in 2003, intense industry lobbying resulted in a last-minute insertion prohibiting Medicare from negotiating those prices.

Without any guardrails, prices for some existing drugs have soared, even as they have fallen sharply in other countries. New drugs — some with minimal benefit — have enormous price tags, buttressed by lobbying and marketing.

AZT, the first drug to successfully treat HIV/AIDS, was labeled “the most expensive drug in history” in the late 1980s. Its $8,000-a-year cost was derided as “inhuman” in a New York Times op-ed. Now, scores of drugs, many with much less benefit, cost more than $50,000 a year. Ten drugs, mostly used to treat rare diseases, cost over $700,000 annually.

Pharmaceutical manufacturers say high U.S. prices support research and development and point out that Americans tend to get new treatments first. But recent research has shown that the price of a drug is related neither to the amount of research and development required to bring it to market nor its therapeutic value.

And selling drugs first in the U.S. is a good business strategy. By introducing a drug in a developed country with limited scrutiny on price, manufacturers can set the bar high for negotiating with other nations.

Here are just a few of the many examples of drug pricing practices that have driven consumers to demand change.

Exhibit A is Humira, the best-selling drug in history, earning AbbVie $200 billion over two decades. Effective in the treatment of various autoimmune diseases, its core patent — the one on the biologic itself — expired in 2016. But for business purposes, the “controlling patent,” the last to expire, is far more important since it allows an ongoing monopoly.

AbbVie blanketed Humira with 165 peripheral patents, covering things like a manufacturing step or slightly new formulation, creating a so-called patent thicket, making it challenging for generics makers to make lower-cost copycats. (When they threatened to do so, AbbVie often offered them valuable deals not to enter the market.) Meanwhile, it continued to raise the price of the drug, most recently to $88,000 a year. This year, Humira-like generics (called biosimilars for its type of molecule) are entering the U.S. market; they have been available for a fraction of the price in Europe for five years.

Or take Revlimid, a drug by Celgene (now part of Bristol Myers Squibb), which treats multiple myeloma. It won FDA approval to treat that previously deadly disease in 2006 at about $4,500 a month; today it retails at triple that. Why? The company’s CEO explained price hikes were simply a “legitimate opportunity” to improve financial “performance.”

Since it must be taken for life to keep that cancer in check, patients who want to live (or their insurers) have had no choice but to pay. Though Revlimid’s patent protection ran out in 2022, Celgene avoided meaningful price-cutting competition by offering generic competitors “volume-limited licenses” to its patents so long as they agreed to initially produce a small share of the drug’s $12 billion monopoly market.

Par Pharmaceutical, another drugmaker, maneuvered to create a blockbuster market out of a centuries-old drug, isoproterenol, through a well-meaning FDA program that gave companies a three-year monopoly in exchange for performing formal testing on drugs in use before the agency was formed.

During those three years, Par wrapped its branded product, Vasostrict, used to maintain blood pressure in critically ill patients, with patents — including one on the compound’s pH level — extending its monopoly eight additional years. Par raised the price by 5,400% between 2010 and 2020. When the covid-19 pandemic filled intensive care units with severely ill patients, that hike cost Americans $600 million to $900 million in the first year.

And then there is AZT and its successors, which offer a full life to HIV-positive people. Pills today contain a combination of two or three medicines, the vast majority including one similar to AZT, tenofovir, made by Gilead Sciences. The individual medicines are old, off-patent. Why then do these combination pills, taken for life, sometimes cost $4,000 monthly?

It’s partly because many manufacturers of the combination pills have agreements with Gilead that they will use its expensive branded version of tenofovir in exchange for various business favors. Peter Staley, an activist with HIV, has been spearheading a class-action suit against Gilead, alleging “collusion.” The negotiated price for these pills is hundreds of dollars a month in the United Kingdom, not the thousands charged in the U.S.

Faced with such tactics, 8 in 10 Americans now support drug price negotiation, giving Congress and the Biden administration the impetus to act and to resist Big Pharma’s legal challenges, which many legal experts view as a desperate attempt to stave off the inevitable.

“I don’t think they have a good legal case,” said Aaron Kesselheim, who studies drug pricing at Harvard Medical School. “But it can delay things if they can find a judge to issue an injunction.” And even a year’s delay could translate into big money.

Yes, American patients are lucky to have first access to innovative drugs. And, sadly, patients in countries that refuse to pay up once in a while go without the latest treatment. But more sadly, polling shows, large numbers of Americans are forgoing prescribed medicines because they can’t afford them.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).